I don't find your vlogs too long at all. In fact, compared to the 10-15 minutes daily some vloggers put out in a week (70-105 total) yours is quite short. I just enjoy the peek into your life, your positivity despite constant new obstacles is encouraging. Take care of yourself, my thoughts and prayers are with you.
i have an amazing chair with electric wheels (they’re called e-move). i push the wheels like normal but a motor in them gives me extra power. it has given me so much freedom since i couldn’t push my chair by my own outside before. it’s so nice not having to ask my friends to push me around all the time and i feel so independent it’s amazing!
I was just telling my husband the other day that your Vlogs are my favorite cause they’re so long it’s like an experience to watch them. I curl up with some tea and a blanket and feel like I’m getting a pep talk from my favorite RUclips vlogger 😂
I think splitting up the prices would be great! I don’t have EDS so I wouldn’t feel comfortable entering and potentially taking a prize that someone who actually needs it could use. But I would LOVE to win some of your jewelry or art! 😍😃
I loooove how long your vlogs are!!! I think you should do separate smaller giveaways, that would be super fun! I’m always so sad when your vlogs end! I just love them so much! Sending lots of spoons and love!
I think it is good to have long and short vlogs, this way folks can choose what they can see. I love her vids too, I just let them run in the kitchen but then sometimes I miss what she says.
I don't know how you do it but your skin looks so dang clear and smooth! I'd love to see a video about how you take care of your skin given all your chemical sensitivities and MCAS!
As the giveaway goes, I think doing a couple smaller packs is a great idea. That way, people can enter for the ones that they are interested in or the ones that would be useful to them. Plus, that way, you can spread the wealth c; I do like your longer vlogs, especially since they only come out once a week, so I wouldn't change a thing!
I love seeing other people's chairs, I always get ideas for how to make my chair suit my needs better and ideas for my future dream chair. I have a Quickie 2 Lite and we were able to get the seatbelt off by unscrewing the little plastic bit that attaches it to the frame of the chair. You may be able to have a family member do that for you or if you ever happen to be at an expo or something where quickie is, it's such a simple two-second change I bet they'd be happy to take it off.
Long videos are great! So glad you found a brace for your ankle! And your little succulent farm is beautiful and warms my heart to see it! Maybe do a few giveaways instead of one big one?! As always I really appreciate your videos every week!
Hi Christina! I have had a Nada Chair since 2005! I originally got it because I was doing medical transcription, and it helped my posture. I found that the compression it puts on my SI joints and hips is actually very beneficial, and helps to relieve some of the pain from sitting. If you use the included "weight distribution thingys" (technical term) on the knee pads, the weight isn't concentrated in one spot, and is much easier on the knees. It also zips up into itself, so it's very portable and lightweight. I hadn't been diagnosed back when I got the Nada Chair, but I have found it to be quite beneficial.
Love the long vlogs also. And I think you should do multiple giveaways rather than 1 bigger one to give more people a chance to win ;) so glad that you finally got into orthopedics & praying that you continue to get answers ♡♡♡
Hello my mom recommended you to me for my EDS.... You don’t know how much you helped and my mom with our EDS. You helped my mom with her neck fusion surgery. Her scar is bulky but she does so much better thanks to your reply. I am also getting some where with my doctors! I am getting AFO’s on both my legs due to my ankle problems going past 5 degrees in bending. So thanks for all the videos you make because seeing making it through the day helps me make it through the day too! So thanks :)
I found your vlog a few months ago and look forward to them every week so I definitely enjoy the longer vlogs! We’re the same age and I’m also going through medical issues and I spend most of my time in my room so it’s nice to see what you do to stay positive and make your surroundings positive. It’s really made a big difference in my life and has helped me look at thing in a better light! Also I love the Theramu balm it has made a huge difference for me and I’m so happy you shared it!Thank you for sharing !
I love the long vlogs💙 For audible recommendations, Stephen Fry’s narration of Sherlock Holmes is amazing. I started it a few days ago, and I’ve been listening to it basically nonstop. I’d 100% recommend it if you have an audible credit, it’s pretty expensive without one. But it’s the complete works so it’s over 60 hours long
Hi Christina! I hope your week is starting off great! I like your wheelchair. I love your vlogs so make them as long as you are able. I worry that all of the editing is difficult for you. Don't stress about it. I got my first cortisone injection last week and I have to wait for Hematology to call me back to schedule an appointment to be cleared for an injection in my cervical spine where I have a pinched nerve. Hemo has to clear me first. 😥😥 But YOU encouraged me to seek PT through your videos, so I start PT on January 30!!!! Hope to get relief between PT and Pain Management. I have a week with no doctor appointments! Not sure what to do with myself! 😊😊. Crocheting sounds good, I'm working on a Valentine's Day blanket. Have a great week. I love the scarf WITH the tassels, and let's face it, tassels are too fun to make to leave them off! ❤️❤️❤️
Love every minute!!! The brace was such a great idea. Its terrible how many things you have to buy and try before you find the right one. Thanks for sharing! I know you have so much frustration with everything going on but own it and blow it off by talking about it and getting it off your chest...then enjoy those things you find joy it...like you just did. I have a amarylis I saved on clearance after Christmas and its almost bloomed...Its so fun to watch the quick progress and enjoy taking care of an easy plant. Im so sorry your having so many issues hit you at once and then the frustration of regular stuff too....I think they weather seems to be kicking everything into hypermode and Its frustrating when you have new things going on and not sure why...we could why 24/7. I like to know!!! Not always possible! I love the visits and your cheery disposition even when your going through so much....you dont have to smile and be brave all the time....you can let us know how to pray for you and to cheer you on. Youve been through so much...today is far less of an issue then the past but it still stinks and you just gotta turn that bad boy around and show him what you know! Hugs
I love your longer video's. I would ask if you could have a extend leg plate for the wheelchair as it will really help you with having your leg in the brace being supported. I found that with having a longer leg plate that supports the leg it helps me to have less problems with that leg cause of the support. I think that you will find that it might make a lot of difference with your leg. I love your video's and family. Take care and God bless you all lot's of love from me kelli xxxxxx
I would do smaller groups for giveaways! since I don't have EDS I wouldn't want to enter to win some things that other people would benefit from, but I would love to enter for jewelry/art/etc! Also, I love that your vlogs are long! I am so excited to watch them every week!
Hi Christina! On the giveaway, I think several smaller prize packets would be better. Sorry you're feeling bad. (And then the brain fog set in and I forgot what I was gonna say...) Anyway, your dog is so cuute!! Those little clips you showed were awesome! The anklebrace you got looks great! I'm considering buying it for my left ankle. Not sure how to finance it yet though. But I'm sure I'll figure it out. I also got fitted for new knee braces today. My PT has said to me on several occasions that I shouldn't expect to suddenly be able to do a whole lot more just because I have braces to help, but I still find myself falling for that trap, anyone else have that problem? My lungs are still bothering me a lot. I'm short of breath and coughing a lot. But it's a dry cough, and it's been there for 8 weeks at least, and I'm like: 'what kind of a bug makes you cough for more than 8 weeks with no fever?'. But my lung doctor said it may be a reaction to the medication. And though it's inconvenient, it really isn't all that bad, so I guess I'll wait to see her again. Your chair looks great! I'm lucky enough to have a pretty good wheelchair myself. I've always considered myself lucky to have been born in the Netherlands and not in the US. Our healthcare and insurance systems are better. At least for more medically fragile people. Awesome that you can get around without it so well, though. I hope the issue with you knee and foot works out in the end.
Esmée Bruinsma Growing up in the US and dealing with the insurance medical system here is absolutely mind boggling. If we need something or are hurt their first question pretty much is about your insurance. If we don't have any we get bills (if we get help) from a few hundred to multiple thousands for emergency visits. Without insurance surgeries can be in the hundreds of thousands or more. It's insane.
Thank you! I can imagine that it's frustrating to not be able to get the care you need. I've always thought it's very unfair. All the best to you as well!
Oh my god that ankle brace I might actually also get. I have been having the same issues for the longest of times. I have been told if I sprain my ankle one more time, I'll have to consider surgery, and that I really want to avoid that, so it has been a struggle to find a solution to fix my ankle. The braces I have are extremely bulky and dig into my leg so any change is welcome ahah. Thanks for the rec!
Zsuzsa Gábor ive has two ankle reconstructions due to so many sprains, even when i’m walking on a flat surface. The first one was a Brostrom Reconstruction. it did a good job for about 5 years, but my ligaments just restretched out. So i went ahead and had a complete anatomical reconstruction, but due to my shitty ligaments, i opted for cadaver tendon, instead of taking part of my body. And i’ve had NO sprains ever since. the only negative side, which was a possibility and i was forewarned, is that i have nerve damage in my pinky and ring toe (ring lol i guess). it’s that painful numb, and sometimes it feel like fire ants are biting my toes. so that really sucks, but it’s worth it to not have any sprains anymore. i was in a brace all the time and i couldn’t do any physical activity, because i would sprain it with the brace. i’m going to be trying some injections with my pain management to see if that will help, and then maybe do the neurolytic/nerve burning if it does. but i wish you good luck!
With the braces I have right now, I don't have any sprains, because they go higher up on my legs. Though they aren't that comfortable... So yeah. That's interesting! I'm quite wary of any reconsruction surgeries for this reason because of that same reason, my ligaments stretching out again. Glad to hear your surgery went well though! Even if you have numbness now. I hope the injections help. Unfortunately my doctors don't really take me that seriously, so I don't really have any hope for a more serious solution. :( Which is why I'm opting for trying to help myself as much as I can ahah Good luck to you too!
Lil giveaways..I know one bigger one would be easier for you..but you can mail out with your regular mailers you use for etsy maybe. Loves and hugs to my favorite eds sisiter! The vlogs are good don't change a thing.
I like the about 25-35 minute vlogs because i learn so much more. You teach the world aton about EDS and you are doing an amazing job of spreading awareness!! One thing struck me as interesting.. I also have about 3 months I don't remember. I also woke up in a rehab facility unable to talk and walk and eat and apparently i was 91lbs @ 5'4". Very scary time for me. I had my life flash before my eyes 3 times and my dad was with me all three times and i hear stories and I don't remember. It's sad and frustrating. Thanks for sharing another week with us! Good luck with your knees and leg. Def gonna get the Donjoy rep out for one of those braces cause of my partial foot drop that happens occasionally. Thanks for the tip!
I bet you'll ace your EMG test sweetie!! I had one done last week!! I was really scared and didn't need to be, it was a piece of cake!! I did find myself giggling during the test as my muscles were jumping and gyrating!! My pain specialist was correct though, he didn't think it would hurt me at all!! Look at all the pains (yes, plural!!) we face every single day!! My muscles are still fairly tender but that has been tolerable too!! Good lucky to you!! You've got this!! XOXO
I really like the long videos, and since they come out once a week I have a few days to catch up if I need it. I also think a couple smaller prizes would be better for the giveaway. Especially since not everyone would need/benefit from everything if it were all in one. I hope you feel better! Gentle hugs!
I love your long vlogs, especially nice after wondering how your doing all week😊. I don’t think I’ve commented before. I found your channel a little while ago and just recently got done watching all your vlogs and videos, so I got used to watching frequently. But I’m all caught up and adjusting to having to wait to see you😄😁. I’m so sorry about all the issues your having right now! I hope this ortho doc helps you!!!🙏
I’m so late in catching up! I was caught in a flare for awhile. I’m over here going “yay!” I’m so glad it fits with your hip bag! It really *is* the little things-ooh and I love the dress with the belt and leggings. I think your vlogs’ length are great - since they’re only once a week, they’re of course longer. If you took a vid a day from folks who post every day and played them at the end of a week I think it would be about 70+ minutes long! LOL Not sayin you should do a 70 minute vlog but I wouldn’t sweat breaking :30 at all. You’re awesome Christina, just keep being you :)
Do different ones for the giveaway so whoever wins doesn't get things that they don't need like someone getting feeding tube stuff when they the asthma part of mast cell or somebody getting stuff for my cell when they don't have my cell and just have the basic hypermobility that comes with EDS
Love your blogs and I would still watch them if they were an hour long or even longer. That ankle brace looks awesome! I sometimes wish I had a wheelchair. When going on adventures that have a lot of walking I think it would really help. At the same time I kind of refuse to accept that I actually might need one, I'm ok, I can do without... right?!? I really do wish for you to have less pain. I wish for your knee situation to be resolved and I wish for you neck pain to go away. Thank you for spreading love and light ❤
I just had my feeding tube changed Monday! I have a j tube so my tube is a bit longer inside and so Interventional Radiology changes them out. It was an urgent change because Saturday my balloon pushed through the stoma, ouch... Thankfully with the extra length we were able to just keep it taped down until the exchange.
Oh! Glad you found an IRL support group!! I tried to make one here but there aren't many of us who are able to go or even drive so it isn't feasible. The nearest one is two hours away =( i would go once a month if I could drive. Praying for you all the time! Your smile is great. EDS and GP messed with my teeth even though i really take care of my teeth i even floss every night and don't eat much sugar (when I Can eat haha..). It's just they are not strong enough i guess. I turned 25 on Jan 14th and just knowing i have to have another oral surgery cause my teeth are just cracking at the botooms and middle like fractures on them kind of... Yea they said it's the EDS. Luckily my oral surgoen does not make me use a bite block and he uses septocain! He uses septocaine too!! Its awesome for EDS patients (=
I love your long vlogs. I've been having a time with my health too so I know how you feel with one thing breaking after another. Like I definitely have some Allodynia patches showing up on my new scar on my chest. Like yay my heart is kinda fixed but now 10 other things are broken.
That zebra dress is so stinking adorable on you!! Gotta love those unpleasant but necessary procedures... glad the doctors are taking things seriously bc that knee/swelling/discoloration is not good. Your body definitely comes first, and I’m sure a lot of us on RUclips don’t need any sort of response. Yesssssss, a fellow sun hater!!! People think I’m insane when I say I hate the sun, but it triggers migraines for me, so I literally avoid it whenever possible. For the giveaway, I’d say split it up, mostly bc I’d feel wrong winning things that I don’t need over someone who would really benefit (like a vogmask or anything like that), but would love the opportunity to win some of your jewelry or art. That Friday scarf was super cute! Since I’m watching this super late, I know that there have been more issues with your health (leg and spinal fusion), so I hope things are looking up with that soon!
Please, please, please put out the uncut footage videos! I really love your videos and I'm always sad when they end. Maybe you could do a long and short version if people are split on preferences? I'm always so motivated by everything you do. I'm super clumsy and at the moment I have a totally skinned knee (I was wearing leggings) that really hurts from a stupid fall on a pet sitting job last night. The pug I was walking was awesome though and sat by me while I cursed (oppsie ha ha). I deal with some stuff that you really inspire me to strive to be my best self through and I sincerely thank you. All the best on your journey!!!
I was thinking about the minor alignment issue you had when replacing your gtube. The Gtube was originally placed when you were lying on your back. Therefore you would have a better alignment if you were lying flat on your back. Because your stomach and abdominal wall will change relative to each other from sitting to lying down. Just a thought and trying to help. I had noticed you had to explore with the new Gtube a bit when placing it.
I've been without internet for the last six months & so I'm catching up on alllllll of your vlogs while I clean, work, relax, etc. I was just gonna comment on your most recent video [whenever I finally reach it] but... "Weiner surgical specialties". Lmfaoooo!! I couldn't ignore that sign. I tried, but I couldn't -- we definitely have a sense of humour in common. :P
I'm a big fan of honesty (probably to the point of oversharing - I'm always making inappropriate jokes about my health status that my drs don't seem to think are funny at all but hey if you don't laugh you'll cry, amirite?) so I'm going to tell you that I found this vlog to be a tad long. I think 30ish minutes is perfect but hey sometimes you have busier weeks and you need the video to be longer to fit it all in and that's totally fine; my pup and I are going to watch anyway! I just wanted to let you know what my persynal preference is just because I usually watch videos to distract myself from pain or other symptoms and if the video is over 30 minutes I find my mind trailing back to the pain. But whatever you choose to do I will support! I'm actually going to share your account on facebook right now with my other EDS peeps
I think smaller ones is a good idea. I would feel bad winning a huge prize pack containing items I may not need because I don't really have friends or family so I couldn't give them to people who could need them. If that makes sense
Also the blogs are a perfect length. I tend to put them on during dinner or when I do my nails and it's so nice to not have to search for videos when I can just play a half hour or more one. Plus it's nice to hear so much about your life and not just snippets, it makes me feel like listening to a friend talk about their week and not just some internet person yknow?
Glad about her doc too so hard to find. Do you when she went to Boston's ER during her 3 month memory lapse, what brought her there to begin with? Is there a Vlog on that? My fight to get a walker is reidiculous, I just don't get a call back. I am thinking of just buying it on-line, Walmart has it cheaper, more choices and a service contract, wish the insurance would deal with them like they deal with the prescriptions.Blessings. How does she do those scarves, they are nice.
love the long vlogs! You could always cut a part 1 (mon-thurs) and part 2 (fri-mon) on sunday, post part 1 on sunday and schedule part 2 for like wednesday! Less cutting out you have to do just a little more uploading, but you can do the multiple upload thingy I think XD
OMG I LOVEEEEEE the woman's shirt at the beginning. It looks like it says "The Future is Accessible". Do you know where she got it?! I would love to get one myself!
Have you heard of AFO's? Just thought I would let you know about them because I know other people with EDS with foot drop and the Ankle Foot Orthotics helped them tremendously.
Audible suggestions: anything narrated by Jim Dale of the Harry Potter audiobooks. He has done a bunch of children’s/YA fantasy adventure books and I love them all. Just type his name into amazon. Peter and the Starcatchers series is my favorite. Also fun by other narrators: Faeries of Dreamdark: Blackbringer by Laini Taylor. Weird but fun: Gormenghast by Mervyn Peake. All of the Artemis Fowl books. Anything by Garth Nix. I could go on and on. Audible is my life.
The Nada chairs are good I have 2 around the house some where. They have been around for a long time. They are good if you have lower back problems or find it hard to sit unsupported or find you can never sit in ordinary chairs. I don't know how they would work for people that dislocate though. I
used to use them to sit at my sewing machine, and that was atleast 15 years ago. My pain has increased massively since then. I did find them very helpful at one stage.
A, the vlogs are not too long. The vlogs are weekly meaning that only 5 minutes give or take are dedicated to each day. Average vloggers put out 12-15 minutes per day, which averages to 84-105 minutes per week. B, a few smaller giveaways would be better than a really big giveaway.
I have the same issue with getting my head in cars too. We have a people mover that has fairly tall doors, but they are still not tall enough. My neck isn't fused except for what my Ankylosing Spondylitis and RA, OA and prolapsed discs has done to it. We are looking at buying a Renault Master Bus,
not only because it has tall doors in the front but to have it made into a wheelchair transporter. My son and I both use power chairs that are big and heavy so we need a hoist and something that attaches the wheelcairs to the floor of the bus so we can sit in them to travel. At the moment I cannot
travel without laying down on a memory foam mattress in the back of our peopel mover (with the seats taken out) which isn't safe at all. I do have a medical exemption from wearing my seatbelt due to my pain but if we have an accident, I'm a projectile as well as being seriously hurt if not dead. So
because eveything on my wheelchair is adjustable I can put it into a laying down position and be belted in and there for, much safer when traveling. Any way............... Hope you get a solution to your knee and leg problem. I have just learned about an EDS savy Neurosurgion that I am working up
the courage to go and see re my C spine. I am not so frightened about the surgery but being intubated when my neck is in such bad shape already. Last time I had a general anesthetic I woke up with no feeling or function all down my left side. I still have a few residual symptoms from that episode.
So to be honest I am terrified. Any way I have to say I admire your courage going into the prospect of surgery like you do. Oh and I like you longer vloggs too.
Oh also, I do some editing for an animal rights group here on youtube and what I've learned is that the average persyn is not going to watch a video much longer than 10 minutes and pretty much every "viral" video out there is only about 3 minutes long. None of this may matter to you but I just wanted to share the information just in case
have you fimled yourself putting a bone back in place? I'm just curious as to what aproach you like to take when situations like your shoulder in this weeks vlog happens.
Lauren Bader she has a video on it somewhere but the cmc brace Push by metagrip is a popular choice. The latest version of the thumb splints from the silver ring splint company (3rd gen) are supposed to be most supportive too although they aren't full cmc braces. Best of luck!
I don't find your vlogs too long at all. In fact, compared to the 10-15 minutes daily some vloggers put out in a week (70-105 total) yours is quite short. I just enjoy the peek into your life, your positivity despite constant new obstacles is encouraging. Take care of yourself, my thoughts and prayers are with you.
Amy Giles I agree!
oh I just wrote something similar, shoulda read farther down first - totally agree! :D
i have an amazing chair with electric wheels (they’re called e-move). i push the wheels like normal but a motor in them gives me extra power. it has given me so much freedom since i couldn’t push my chair by my own outside before. it’s so nice not having to ask my friends to push me around all the time and i feel so independent it’s amazing!
I was just telling my husband the other day that your Vlogs are my favorite cause they’re so long it’s like an experience to watch them. I curl up with some tea and a blanket and feel like I’m getting a pep talk from my favorite RUclips vlogger 😂
I think splitting up the prices would be great! I don’t have EDS so I wouldn’t feel comfortable entering and potentially taking a prize that someone who actually needs it could use. But I would LOVE to win some of your jewelry or art! 😍😃
I love Long vlogs so sign me up I’m here for every week with you! Glad you found a brace that works for you xx
The longer the vid the better your my therapy on the hard days sound was missing in part of vlog sending hugs from uk
Lisaa Exactly!! Hugs from Virginia, USA! ❤️
I loooove how long your vlogs are!!! I think you should do separate smaller giveaways, that would be super fun! I’m always so sad when your vlogs end! I just love them so much! Sending lots of spoons and love!
I think it is good to have long and short vlogs, this way folks can choose what they can see. I love her vids too, I just let them run in the kitchen but then sometimes I miss what she says.
I looooove long vlogs, especially if they're from you! :)
I don't know how you do it but your skin looks so dang clear and smooth! I'd love to see a video about how you take care of your skin given all your chemical sensitivities and MCAS!
I absolutely love your hat and scarf...so soft cozy and fashionable. Your amazing.
Love long blogs so don't worry about it! 😊
is anyone else’s audio going out around the 26:45 mark?
Bumpy Back Roads yup! Mine too
Bumpy Back Roads mine did as well.
Bumpy Back Roads yup, same here
same thing happened to mine
Bumpy Back Roads yep!
A long vlog once a week is perfect to me
I love your vlogs on the long side. I watch them while doing my makeup in the morning and I am slow and take awhile!
I LOVE your vlogs!! The longer the better ❤❤❤
My GI doctors name is Dr.Wiener & i always think about how funny it would be if he had gone into Urology instead
Megan Smithers 😂😂😂😂😂
I once had a dermatologist named Dr. Pitts! Never go to a doctor named Payne. lol
As the giveaway goes, I think doing a couple smaller packs is a great idea. That way, people can enter for the ones that they are interested in or the ones that would be useful to them. Plus, that way, you can spread the wealth c;
I do like your longer vlogs, especially since they only come out once a week, so I wouldn't change a thing!
I love seeing other people's chairs, I always get ideas for how to make my chair suit my needs better and ideas for my future dream chair. I have a Quickie 2 Lite and we were able to get the seatbelt off by unscrewing the little plastic bit that attaches it to the frame of the chair. You may be able to have a family member do that for you or if you ever happen to be at an expo or something where quickie is, it's such a simple two-second change I bet they'd be happy to take it off.
Long videos are great! So glad you found a brace for your ankle! And your little succulent farm is beautiful and warms my heart to see it! Maybe do a few giveaways instead of one big one?! As always I really appreciate your videos every week!
Hi Christina! I have had a Nada Chair since 2005! I originally got it because I was doing medical transcription, and it helped my posture. I found that the compression it puts on my SI joints and hips is actually very beneficial, and helps to relieve some of the pain from sitting. If you use the included "weight distribution thingys" (technical term) on the knee pads, the weight isn't concentrated in one spot, and is much easier on the knees. It also zips up into itself, so it's very portable and lightweight. I hadn't been diagnosed back when I got the Nada Chair, but I have found it to be quite beneficial.
Your vlogs are great the way they are! Always look forward to watching them on Mondays!
I love them long, I want longer. Hugs xxx
I love the longer vlogs
Love the long vlogs also. And I think you should do multiple giveaways rather than 1 bigger one to give more people a chance to win ;) so glad that you finally got into orthopedics & praying that you continue to get answers ♡♡♡
Yay!! An early video!! And a LONG one!!! Please make them long as we really enjoy them! ❤️
Hello my mom recommended you to me for my EDS.... You don’t know how much you helped and my mom with our EDS. You helped my mom with her neck fusion surgery. Her scar is bulky but she does so much better thanks to your reply. I am also getting some where with my doctors! I am getting AFO’s on both my legs due to my ankle problems going past 5 degrees in bending. So thanks for all the videos you make because seeing making it through the day helps me make it through the day too! So thanks :)
I could watch a long vlog from you every day❤️
I found your vlog a few months ago and look forward to them every week so I definitely enjoy the longer vlogs! We’re the same age and I’m also going through medical issues and I spend most of my time in my room so it’s nice to see what you do to stay positive and make your surroundings positive. It’s really made a big difference in my life and has helped me look at thing in a better light! Also I love the Theramu balm it has made a huge difference for me and I’m so happy you shared it!Thank you for sharing !
I love the long vlogs💙 For audible recommendations, Stephen Fry’s narration of Sherlock Holmes is amazing. I started it a few days ago, and I’ve been listening to it basically nonstop. I’d 100% recommend it if you have an audible credit, it’s pretty expensive without one. But it’s the complete works so it’s over 60 hours long
Hi Christina! I hope your week is starting off great! I like your wheelchair. I love your vlogs so make them as long as you are able. I worry that all of the editing is difficult for you. Don't stress about it. I got my first cortisone injection last week and I have to wait for Hematology to call me back to schedule an appointment to be cleared for an injection in my cervical spine where I have a pinched nerve. Hemo has to clear me first. 😥😥 But YOU encouraged me to seek PT through your videos, so I start PT on January 30!!!! Hope to get relief between PT and Pain Management. I have a week with no doctor appointments! Not sure what to do with myself! 😊😊. Crocheting sounds good, I'm working on a Valentine's Day blanket. Have a great week. I love the scarf WITH the tassels, and let's face it, tassels are too fun to make to leave them off! ❤️❤️❤️
Love the long vlogs!
I love these long vlogs too. Daily vlogs I watch between things I do. For this vlog I realy sit down for with a snack and a drink and watch it.
Love every minute!!! The brace was such a great idea. Its terrible how many things you have to buy and try before you find the right one. Thanks for sharing! I know you have so much frustration with everything going on but own it and blow it off by talking about it and getting it off your chest...then enjoy those things you find joy it...like you just did. I have a amarylis I saved on clearance after Christmas and its almost bloomed...Its so fun to watch the quick progress and enjoy taking care of an easy plant. Im so sorry your having so many issues hit you at once and then the frustration of regular stuff too....I think they weather seems to be kicking everything into hypermode and Its frustrating when you have new things going on and not sure why...we could why 24/7. I like to know!!! Not always possible! I love the visits and your cheery disposition even when your going through so much....you dont have to smile and be brave all the time....you can let us know how to pray for you and to cheer you on. Youve been through so much...today is far less of an issue then the past but it still stinks and you just gotta turn that bad boy around and show him what you know! Hugs
I love your longer video's. I would ask if you could have a extend leg plate for the wheelchair as it will really help you with having your leg in the brace being supported. I found that with having a longer leg plate that supports the leg it helps me to have less problems with that leg cause of the support. I think that you will find that it might make a lot of difference with your leg. I love your video's and family. Take care and God bless you all lot's of love from me kelli xxxxxx
I would do smaller groups for giveaways! since I don't have EDS I wouldn't want to enter to win some things that other people would benefit from, but I would love to enter for jewelry/art/etc!
Also, I love that your vlogs are long! I am so excited to watch them every week!
Hi Christina! On the giveaway, I think several smaller prize packets would be better. Sorry you're feeling bad. (And then the brain fog set in and I forgot what I was gonna say...) Anyway, your dog is so cuute!! Those little clips you showed were awesome! The anklebrace you got looks great! I'm considering buying it for my left ankle. Not sure how to finance it yet though. But I'm sure I'll figure it out. I also got fitted for new knee braces today. My PT has said to me on several occasions that I shouldn't expect to suddenly be able to do a whole lot more just because I have braces to help, but I still find myself falling for that trap, anyone else have that problem?
My lungs are still bothering me a lot. I'm short of breath and coughing a lot. But it's a dry cough, and it's been there for 8 weeks at least, and I'm like: 'what kind of a bug makes you cough for more than 8 weeks with no fever?'. But my lung doctor said it may be a reaction to the medication. And though it's inconvenient, it really isn't all that bad, so I guess I'll wait to see her again.
Your chair looks great! I'm lucky enough to have a pretty good wheelchair myself. I've always considered myself lucky to have been born in the Netherlands and not in the US. Our healthcare and insurance systems are better. At least for more medically fragile people. Awesome that you can get around without it so well, though. I hope the issue with you knee and foot works out in the end.
Esmée Bruinsma Growing up in the US and dealing with the insurance medical system here is absolutely mind boggling. If we need something or are hurt their first question pretty much is about your insurance. If we don't have any we get bills (if we get help) from a few hundred to multiple thousands for emergency visits. Without insurance surgeries can be in the hundreds of thousands or more. It's insane.
I wish you the absolute best in everything!
Thank you! I can imagine that it's frustrating to not be able to get the care you need. I've always thought it's very unfair. All the best to you as well!
Oh my god that ankle brace I might actually also get. I have been having the same issues for the longest of times. I have been told if I sprain my ankle one more time, I'll have to consider surgery, and that I really want to avoid that, so it has been a struggle to find a solution to fix my ankle. The braces I have are extremely bulky and dig into my leg so any change is welcome ahah. Thanks for the rec!
Zsuzsa Gábor ive has two ankle reconstructions due to so many sprains, even when i’m walking on a flat surface. The first one was a Brostrom Reconstruction. it did a good job for about 5 years, but my ligaments just restretched out. So i went ahead and had a complete anatomical reconstruction, but due to my shitty ligaments, i opted for cadaver tendon, instead of taking part of my body. And i’ve had NO sprains ever since. the only negative side, which was a possibility and i was forewarned, is that i have nerve damage in my pinky and ring toe (ring lol i guess). it’s that painful numb, and sometimes it feel like fire ants are biting my toes. so that really sucks, but it’s worth it to not have any sprains anymore. i was in a brace all the time and i couldn’t do any physical activity, because i would sprain it with the brace. i’m going to be trying some injections with my pain management to see if that will help, and then maybe do the neurolytic/nerve burning if it does.
but i wish you good luck!
With the braces I have right now, I don't have any sprains, because they go higher up on my legs. Though they aren't that comfortable... So yeah.
That's interesting! I'm quite wary of any reconsruction surgeries for this reason because of that same reason, my ligaments stretching out again.
Glad to hear your surgery went well though! Even if you have numbness now. I hope the injections help.
Unfortunately my doctors don't really take me that seriously, so I don't really have any hope for a more serious solution. :( Which is why I'm opting for trying to help myself as much as I can ahah
Good luck to you too!
Love the length of the video! No change necessary. Hope you're having a good night😊
I LOOOOOVE THE LONG VIDEOS! Add those extra 20 mins girl~!
Lil giveaways..I know one bigger one would be easier for you..but you can mail out with your regular mailers you use for etsy maybe. Loves and hugs to my favorite eds sisiter! The vlogs are good don't change a thing.
I like the about 25-35 minute vlogs because i learn so much more. You teach the world aton about EDS and you are doing an amazing job of spreading awareness!! One thing struck me as interesting.. I also have about 3 months I don't remember. I also woke up in a rehab facility unable to talk and walk and eat and apparently i was 91lbs @ 5'4". Very scary time for me. I had my life flash before my eyes 3 times and my dad was with me all three times and i hear stories and I don't remember. It's sad and frustrating. Thanks for sharing another week with us! Good luck with your knees and leg. Def gonna get the Donjoy rep out for one of those braces cause of my partial foot drop that happens occasionally. Thanks for the tip!
Your chair’s really nice! But it’s amazing that you’re not dependent on it anymore 😊
Longer vlogs! I love them :)
I bet you'll ace your EMG test sweetie!! I had one done last week!! I was really scared and didn't need to be, it was a piece of cake!! I did find myself giggling during the test as my muscles were jumping and gyrating!! My pain specialist was correct though, he didn't think it would hurt me at all!! Look at all the pains (yes, plural!!) we face every single day!! My muscles are still fairly tender but that has been tolerable too!! Good lucky to you!! You've got this!! XOXO
I really like the long videos, and since they come out once a week I have a few days to catch up if I need it. I also think a couple smaller prizes would be better for the giveaway. Especially since not everyone would need/benefit from everything if it were all in one. I hope you feel better! Gentle hugs!
I love the long vlogs.
I love your longer vlogs!
I love your long vlogs, especially nice after wondering how your doing all week😊. I don’t think I’ve commented before. I found your channel a little while ago and just recently got done watching all your vlogs and videos, so I got used to watching frequently. But I’m all caught up and adjusting to having to wait to see you😄😁. I’m so sorry about all the issues your having right now! I hope this ortho doc helps you!!!🙏
I love the long vlog! I'm so excited I was in your vlog 💛
I’m so late in catching up! I was caught in a flare for awhile. I’m over here going “yay!” I’m so glad it fits with your hip bag! It really *is* the little things-ooh and I love the dress with the belt and leggings. I think your vlogs’ length are great - since they’re only once a week, they’re of course longer. If you took a vid a day from folks who post every day and played them at the end of a week I think it would be about 70+ minutes long! LOL Not sayin you should do a 70 minute vlog but I wouldn’t sweat breaking :30 at all. You’re awesome Christina, just keep being you :)
Do different ones for the giveaway so whoever wins doesn't get things that they don't need like someone getting feeding tube stuff when they the asthma part of mast cell or somebody getting stuff for my cell when they don't have my cell and just have the basic hypermobility that comes with EDS
I love longer videos!
I love long vlogs! ❤️❤️
Yay so happy for you
I had an EMG when I was nine, I wasn't bad at all. I can say it can be uncomfortable but not painful.
I love the long vlogs, they're great :)
Love your blogs and I would still watch them if they were an hour long or even longer.
That ankle brace looks awesome!
I sometimes wish I had a wheelchair. When going on adventures that have a lot of walking I think it would really help. At the same time I kind of refuse to accept that I actually might need one, I'm ok, I can do without... right?!?
I really do wish for you to have less pain. I wish for your knee situation to be resolved and I wish for you neck pain to go away.
Thank you for spreading love and light ❤
I just had my feeding tube changed Monday! I have a j tube so my tube is a bit longer inside and so Interventional Radiology changes them out. It was an urgent change because Saturday my balloon pushed through the stoma, ouch... Thankfully with the extra length we were able to just keep it taped down until the exchange.
Split up the prizes!
Oh! Glad you found an IRL support group!! I tried to make one here but there aren't many of us who are able to go or even drive so it isn't feasible. The nearest one is two hours away =( i would go once a month if I could drive. Praying for you all the time! Your smile is great. EDS and GP messed with my teeth even though i really take care of my teeth i even floss every night and don't eat much sugar (when I Can eat haha..). It's just they are not strong enough i guess. I turned 25 on Jan 14th and just knowing i have to have another oral surgery cause my teeth are just cracking at the botooms and middle like fractures on them kind of... Yea they said it's the EDS. Luckily my oral surgoen does not make me use a bite block and he uses septocain! He uses septocaine too!! Its awesome for EDS patients (=
I love your long vlogs. I've been having a time with my health too so I know how you feel with one thing breaking after another. Like I definitely have some Allodynia patches showing up on my new scar on my chest. Like yay my heart is kinda fixed but now 10 other things are broken.
That zebra dress is so stinking adorable on you!! Gotta love those unpleasant but necessary procedures... glad the doctors are taking things seriously bc that knee/swelling/discoloration is not good. Your body definitely comes first, and I’m sure a lot of us on RUclips don’t need any sort of response. Yesssssss, a fellow sun hater!!! People think I’m insane when I say I hate the sun, but it triggers migraines for me, so I literally avoid it whenever possible. For the giveaway, I’d say split it up, mostly bc I’d feel wrong winning things that I don’t need over someone who would really benefit (like a vogmask or anything like that), but would love the opportunity to win some of your jewelry or art. That Friday scarf was super cute!
Since I’m watching this super late, I know that there have been more issues with your health (leg and spinal fusion), so I hope things are looking up with that soon!
Please, please, please put out the uncut footage videos! I really love your videos and I'm always sad when they end. Maybe you could do a long and short version if people are split on preferences? I'm always so motivated by everything you do. I'm super clumsy and at the moment I have a totally skinned knee (I was wearing leggings) that really hurts from a stupid fall on a pet sitting job last night. The pug I was walking was awesome though and sat by me while I cursed (oppsie ha ha). I deal with some stuff that you really inspire me to strive to be my best self through and I sincerely thank you. All the best on your journey!!!
I was thinking about the minor alignment issue you had when replacing your gtube. The Gtube was originally placed when you were lying on your back. Therefore you would have a better alignment if you were lying flat on your back. Because your stomach and abdominal wall will change relative to each other from sitting to lying down. Just a thought and trying to help. I had noticed you had to explore with the new Gtube a bit when placing it.
I've been without internet for the last six months & so I'm catching up on alllllll of your vlogs while I clean, work, relax, etc. I was just gonna comment on your most recent video [whenever I finally reach it] but... "Weiner surgical specialties". Lmfaoooo!! I couldn't ignore that sign. I tried, but I couldn't -- we definitely have a sense of humour in common. :P
I like the long videos
I loved the subtle Frey life reference.. I ain’t got no needle in my chest in my chest 🎉🎉🎉
I like and want longer vlogs as i am in the proses of a diagnoses and i have already been diagnosed with tmj
I'm a big fan of honesty (probably to the point of oversharing - I'm always making inappropriate jokes about my health status that my drs don't seem to think are funny at all but hey if you don't laugh you'll cry, amirite?) so I'm going to tell you that I found this vlog to be a tad long. I think 30ish minutes is perfect but hey sometimes you have busier weeks and you need the video to be longer to fit it all in and that's totally fine; my pup and I are going to watch anyway! I just wanted to let you know what my persynal preference is just because I usually watch videos to distract myself from pain or other symptoms and if the video is over 30 minutes I find my mind trailing back to the pain. But whatever you choose to do I will support! I'm actually going to share your account on facebook right now with my other EDS peeps
Love the length!! There was no sound at one point in the middle of it....did you know that?
the longer the better
I think smaller ones is a good idea. I would feel bad winning a huge prize pack containing items I may not need because I don't really have friends or family so I couldn't give them to people who could need them. If that makes sense
Also the blogs are a perfect length. I tend to put them on during dinner or when I do my nails and it's so nice to not have to search for videos when I can just play a half hour or more one. Plus it's nice to hear so much about your life and not just snippets, it makes me feel like listening to a friend talk about their week and not just some internet person yknow?
That's awesome that you found a good doctor's office :) How long of a drive is it for you?
Glad about her doc too so hard to find. Do you when she went to Boston's ER during her 3 month memory lapse, what brought her there to begin with? Is there a Vlog on that? My fight to get a walker is reidiculous, I just don't get a call back. I am thinking of just buying it on-line, Walmart has it cheaper, more choices and a service contract, wish the insurance would deal with them like they deal with the prescriptions.Blessings.
How does she do those scarves, they are nice.
I'd love several small giveaways so more people can feel lucky 😃
love the long vlogs! You could always cut a part 1 (mon-thurs) and part 2 (fri-mon) on sunday, post part 1 on sunday and schedule part 2 for like wednesday! Less cutting out you have to do just a little more uploading, but you can do the multiple upload thingy I think XD
Oh no, I'm so sad I missed the New England EDS etc. meeting this time. I was still still on winter break :(
OMG I LOVEEEEEE the woman's shirt at the beginning. It looks like it says "The Future is Accessible". Do you know where she got it?! I would love to get one myself!
Please just leave the vlogs as long as possible :) they couldn't be too long ^^
Have you heard of AFO's? Just thought I would let you know about them because I know other people with EDS with foot drop and the Ankle Foot Orthotics helped them tremendously.
Audible suggestions: anything narrated by Jim Dale of the Harry Potter audiobooks. He has done a bunch of children’s/YA fantasy adventure books and I love them all. Just type his name into amazon. Peter and the Starcatchers series is my favorite. Also fun by other narrators: Faeries of Dreamdark: Blackbringer by Laini Taylor. Weird but fun: Gormenghast by Mervyn Peake. All of the Artemis Fowl books. Anything by Garth Nix. I could go on and on. Audible is my life.
The Nada chairs are good I have 2 around the house some where. They have been around for a long time. They are good if you have lower back problems or find it hard to sit unsupported or find you can never sit in ordinary chairs. I don't know how they would work for people that dislocate though. I
used to use them to sit at my sewing machine, and that was atleast 15 years ago. My pain has increased massively since then. I did find them very helpful at one stage.
A, the vlogs are not too long. The vlogs are weekly meaning that only 5 minutes give or take are dedicated to each day. Average vloggers put out 12-15 minutes per day, which averages to 84-105 minutes per week. B, a few smaller giveaways would be better than a really big giveaway.
I have the same issue with getting my head in cars too. We have a people mover that has fairly tall doors, but they are still not tall enough. My neck isn't fused except for what my Ankylosing Spondylitis and RA, OA and prolapsed discs has done to it. We are looking at buying a Renault Master Bus,
not only because it has tall doors in the front but to have it made into a wheelchair transporter. My son and I both use power chairs that are big and heavy so we need a hoist and something that attaches the wheelcairs to the floor of the bus so we can sit in them to travel. At the moment I cannot
travel without laying down on a memory foam mattress in the back of our peopel mover (with the seats taken out) which isn't safe at all. I do have a medical exemption from wearing my seatbelt due to my pain but if we have an accident, I'm a projectile as well as being seriously hurt if not dead. So
because eveything on my wheelchair is adjustable I can put it into a laying down position and be belted in and there for, much safer when traveling. Any way............... Hope you get a solution to your knee and leg problem. I have just learned about an EDS savy Neurosurgion that I am working up
the courage to go and see re my C spine. I am not so frightened about the surgery but being intubated when my neck is in such bad shape already. Last time I had a general anesthetic I woke up with no feeling or function all down my left side. I still have a few residual symptoms from that episode.
So to be honest I am terrified. Any way I have to say I admire your courage going into the prospect of surgery like you do. Oh and I like you longer vloggs too.
Hi was this video made before or after your cervical fusion?
do you think your home care nurse can do your tube change? that would be so practical. i would think they would have someone who can.
Oh also, I do some editing for an animal rights group here on youtube and what I've learned is that the average persyn is not going to watch a video much longer than 10 minutes and pretty much every "viral" video out there is only about 3 minutes long. None of this may matter to you but I just wanted to share the information just in case
have you fimled yourself putting a bone back in place? I'm just curious as to what aproach you like to take when situations like your shoulder in this weeks vlog happens.
my physical therapist gave me one of those sitting things before! there are ones of several different brands
I have a squishmellow stuff animal to but i use it ony back
❤️
I need a thumb joint brace- any suggestions?
Lauren Bader she has a video on it somewhere but the cmc brace Push by metagrip is a popular choice. The latest version of the thumb splints from the silver ring splint company (3rd gen) are supposed to be most supportive too although they aren't full cmc braces. Best of luck!
I have been waiting a vog mask sooo bad, but they are so expensive. Do you have any promo codes that still work
+Mackenzie Powell Yes I do! Enter “sickchicks” at checkout for $10 off! 💜
Christina Doherty omg thank you! I'm gonna ask my bf to get me that for Valentine's day!
idm it that long.