Hi Christina, I'm Molly's mum, from Wales in the UK. I am so overjoyed to see your progress, and seeing you reach personal goals. Well done lovely. It's a wonderful thing you do, sharing your experiences. Much love x
My son, who was born with 1/4 of his brain missing (we knew this when we adopted him from China) had vision thearpy several years ago. His vision was discribed as if he was looking through a tube, they had him do lots of exercises, and at home he had to look into a light for 20 mins every day for like 3-4 weeks. At the end, his vison opened up all the way! Like you, it had nothing to do with his eyes, but with retraining his brain. The brain is an amazing thing. My son is so normal though. The only symptom he really has is his right side is weak, and he doesn't use his right hand much. He brian has re-routed for just about everything else! Cool hu!
+Chelsie Wise That is an incredibly cool story! Good for him! And good for you guys for helping him through that, Im sure that wasn't easy on any of you trying to get a little one to do his exercises. So glad to hear that he is doing so well these days!
Hi! Christina I am 25yrs old girl from South Korea. I just found your video by searching 'Vision Theraphy'. I recently started this theraphy,, last week! for my eyes pain and sth etc. Actually there are nobody doing this theraphy around me and I felt lonely and scared this whole week. Maybe I was very nervous whether My eyes will be better a few month later. But because of you I feel like I got new friend who has same treatment and go through similar stage of life. Now I live alone (apart from hometown) to find job near my Univ so there were nobody to talk about this and my whole emotion. However your smile and brightness made me stable and comfortable. Thanks for all your videos and I will stand up again for future🙏 I love your energy !
+쩡이당 11 Aww thank you for reaching out! Im glad I can be a friend from across the world. I am actually back at the place for two weeks right now to continue my therapies, so the timing is perfect! We can go through it together 😊 It has definitely been helping me but it has been a strange adjustment. Sometimes I felt like my vision was worse, but that just meant that it was changing and I had to get used to it. They say that is totally normal. So don't get frustrated if things get hard, its all part of the process 💕
+Jada Morris Awww welcome to the zebra herd (dazzle)! Sorry Im a bit late. Im glad my videos have been some help to you 💜 I am always here if you have any questions (even if Im a week late❤️)
What I do: I crush things as fine as I can...add warm water and mix and let them sit. Then I take out coating that didn't dissolve. I haven't clogged it yet!
pharmacist here-the second I heard "my insurance won't cover liquid meds" I thought of possible solutions. I'm sure you have, but have you worked with your pharmacist and prescribers to get prior authorizarions on the liquid form? if your condition prevents you from crushing the tabs, you should be able to fight insurance for them :)
Jennifer Draheim That's what I was thinking (former medical office employee here lol) & I have past experience in Human Resources...another idea is to contact the Human Resources of the employer where the insurance comes through, and there should be a liaison rep for the insurance company who can get special authorization from the higher ups of the insurance co
+Jennifer Draheim I guess thats a fight Im going to have to fight. We have had so much on our plates that it wasn't really the priority, but things have calmed down a bit now so it's probably time.
So amazed by your determination and how much progress you have made Christina. Thrilled for you and clearly shows that being pro-active and putting in the hard work pays off. I'm so glad that you have a more optimistic future ahead of you. xx
That dress you tried on in the mall was SUPER cute!! This was a really interesting video, all of the other EDS patients and all the things u and your mom thought to get your walking in!! Hope you're home OR near home and close to your bed!!
+Victoria Lafond Thank you! Definitely still a work in progress, but Its so nice to know that there is actually something that I can do to improve things. Its such a powerful feeling! ❤️
Glad You're doing so well and vision theropy is going good You are such a strong person You're amazing all You go through and how You handle things Your Mom is awesome all she does for You Mom's are great hope Your week is good don't worry about answering comments God Bless
I'm so happy for you that you can can walk for 30 minutes. I cannot walk for much myself. It had to be a quick trip to the store to walk. I usually use their motorized cart. I have so much pain especially hips. I had to buy a rollator. You are inspirational.
+Jessica Tieking Boy, let me tell ya, it still isn’t easy, but a couple years ago I couldn’t take 2 steps. We all start somewhere. And unfortunately its a lot of up and down. All you can do is your best 💜
Yeah, I know. Sometimes it's really hard not to compare myself to others especially fellow EDSers. I tend to think since they can do something then I should too. I walk at the store on our shorter trips. I still have to use a rollator now but it's my walking. But it still use their motorized cart on our longer trips to get groceries. It's my best. ^_^
Why haven't you responded to the comment I left one second ago?!? lol j/k you do what you can do & what you do is a lot! I don't know how you can take the time to edit your videos, add music & graphics & can get through all that without getting exhausted!
I have awful EDS & arthritis pain before it rains, not headache so much anymore but good Lord I feel SO bad & it must be barometric pressure. I feel much better when it finally rains. What store were you in? I've heard those back trigger therapy things are great.
My sons have both been through many many months of we call it Behavioural Optometry in Australia. They also both have Scotopic Sensitivity where they get coloured lenses to help with that, same thing with hearing, all of their sensory issues didn't work like they were supposed to. Had no idea any
+NJSMKMMS Im so glad that you have access to these therapies for your sons. I would be very interested in the hearing aspect as well. My hearing is technically fine but I have a lot of trouble processing what I hear.
Yes, Well the sound therapy is one of the least taxing of allot of the therapeutic measures we covered. For US, it lasted much longer than many of the others. They give you specific testing to see where the weakness's are, for example, (there are specific names, but I don't remember them that
well) both of my boys had trouble hearing, when there was back ground noise, they also needed more time to process what was being said than some. Not being able to hear the differnt vowels, Also the beginnings of words like sh, ch, th, f, c, s. There were others too. There are different 'brands' of
sound therapy, the one we used was Samonas. I think now the one getting the best results is called The Listening Program. Not overly sure how it works now but it's very basically lt's listening to specially sound engineered music and sounds it was on CD's, now down loaded onto, can't remember what
Well, I think learning to relax your eyes is a really good thing. It would be nice to show us some of the exercises - for some people it will resonate and help - it doesn't mean we will all go out and do innappropriate things with our eyes!
+Mama With A Fro I have gotten a lot of cool tips and tricks from you guys down here for in the comments. So who knows, maybe we will discover a new technique 😊
I really wish I could meet EDS patients who have as much medical involvement as me! I have met other EDS patients but the issue is that all the patients I have met are not severely effected so I find it hard to relate to them. I also totally understand not wanting to go to appointments. The past like 6 months I have had no desire to go to doctors just because I want to live my life. But I have also been NJ fed for the past 6 months and TPN fed for the past a bit over a month now and my GI system is only getting worse(Esphogheal Spasms, Colonic Inertia, Small Intestinal Dysmotility, Severe Gastroparesis, Small Intestinal Bacterial Overgrowth, Malabsorption, and now suspected pancreatic insuffiencey). So now it has all caught up to me and I 6 GI related appointments in the next month and awaiting to schedule an appointment with an out of state motility specialist. And awaiting more permanent surgeries to help provide me more longterm nutrition
Madison do you watch Cheyanne Perry, The Rural Teacake, Kathleen Gagnon, and Chronically Jacquie? They are all UA-cam channels run by EDSers who have lots of other issues
Someone else with EDS who has pancreatic insufficiency?! Holy shit, I was starting to think I was the only one. When I did my bloodwork for the GI specialist, my amylase was really really low & my lipase was at the low end of average. I've had a lot of pain in that area of my abdomen before that lead to hospitalizations but I was just "crazy". But that issue totally explains my malabsorption, motility, & IBS-like symptoms -- I also have a hiatal hernia. I still need to go see if I can get some enzyme replacements but... Right now, I'm just leading a pretty low carb/low sugar/lactose-free life & I still have problems but they're less than half of what they were. I'm so sorry you're having issues relating to others... I'd probably be considered on the more mild end of the spectrum which actually causes me difficulty, honestly, in relating to others with the condition. I don't have POTS [some dysautonomia but it's not to that disruptive severity], gastroparesis, MCAD/MCAS, chiari, etc. So sometimes I feel like my complaints & disability are not as valid because they're not to the same extent? IDK. But I feel for you & I really hope you find the solutions you need. Good luck xx
+Madison I hope you guys will be able to find that support that you want. The dysautonomia support network has a lot of EDS people and I think they have a local chapter in every US state. Maybe you can meet people that way. And if not, theres always us here online 💕
If you don't mind me asking, are those vision exercises for strabismus? I've got it from my EDS and it's killing me, but i can't afford to see a doctor for it.
Molly モリー She has answered this in a video quite a while ago. and if i remember correctly she said she hasn't had really any reactions to makeup surprisingly. so she does wear it but I can't remember what kind.
+Molly モリー Yes I do wear makeup! Mostly eye makeup. My skin doesn't really like foundation and stuff, but I am actually okay with eyeliner and mascara as long as I use allergy eye drops before and after and take it off right when I get home. My eyes so kind of burn a bit from it so I don't wear it everyday, but its not so bad that it stops me.
I always look forward to your vids! Actually, wish you would make more. Your personality is infectious! There are some other Edsers I follow on twitter and they can be so nasty, victimized and judgmental of "non-disabled" people. I think if they had a better attitude it might help them physically.
+Devon Jones I wish I made more too 😊 Ive got a few ideas and scripts written but the time and energy have just not lined up quite yet so far hahaha But there will be more!
don't worry too much about not replying to all of your comments. I know personally I'd rather know that you're taking care of yourself instead of spending all of your spoons on replies. I love the eyepatch, it's pirate Christina. hopefully she doesn't hide her treasure like sleeping Christina ;P I hope your drive e home was good, and that your mom let you get a sloth for your sister on the way back at least, considering how many sloths you had to pass over. sloths are the best.
+decharmedfreak Thank you so much! Hah, yeah pirate Christina feels like a throwback to middle school Christina who had side bangs she wore over her left eye. To this day I swear that is why my left eye is weaker than my right... my mom was actually right. 😂 And no, there was no sloth purchase on this trip. The no more stuffed animals crack down is real hahahaha. We have SO. MANY. The entire attic is probably just bins full of stuffed animals.
🦋Your mother is fantastic! 🦋
+JuneBugSmuggler She truly is 💕
Hi Christina, I'm Molly's mum, from Wales in the UK. I am so overjoyed to see your progress, and seeing you reach personal goals. Well done lovely. It's a wonderful thing you do, sharing your experiences. Much love x
+Tasha Stubbs-Davies Aww thank you! You guys are the reason I make these videos. Thank you for taking your time to watch my videos 💕
My son, who was born with 1/4 of his brain missing (we knew this when we adopted him from China) had vision thearpy several years ago. His vision was discribed as if he was looking through a tube, they had him do lots of exercises, and at home he had to look into a light for 20 mins every day for like 3-4 weeks. At the end, his vison opened up all the way! Like you, it had nothing to do with his eyes, but with retraining his brain. The brain is an amazing thing. My son is so normal though. The only symptom he really has is his right side is weak, and he doesn't use his right hand much. He brian has re-routed for just about everything else! Cool hu!
+Chelsie Wise That is an incredibly cool story! Good for him! And good for you guys for helping him through that, Im sure that wasn't easy on any of you trying to get a little one to do his exercises. So glad to hear that he is doing so well these days!
aww that is amazing xxx
Did anyone notice how expensive these 30 minute walks are?????? ~ Christina's Mom (not sure why this says "Lauren Doherty")
Lauren Doherty 😂😂 yes
+Lauren Doherty Mom, Lauren is logged in on your laptop. You need to log into your account 😂😂😂😂
EDS moms are everything. Happy to see you doing so well ✨
+Kellie Tipton They sure are! Superwomen for sure! 💕
Hi! Christina I am 25yrs old girl from South Korea. I just found your video by searching 'Vision Theraphy'. I recently started this theraphy,, last week! for my eyes pain and sth etc. Actually there are nobody doing this theraphy around me and I felt lonely and scared this whole week. Maybe I was very nervous whether My eyes will be better a few month later. But because of you I feel like I got new friend who has same treatment and go through similar stage of life. Now I live alone (apart from hometown) to find job near my Univ so there were nobody to talk about this and my whole emotion. However your smile and brightness made me stable and comfortable. Thanks for all your videos and I will stand up again for future🙏 I love your energy !
+쩡이당 11 Aww thank you for reaching out! Im glad I can be a friend from across the world. I am actually back at the place for two weeks right now to continue my therapies, so the timing is perfect! We can go through it together 😊 It has definitely been helping me but it has been a strange adjustment. Sometimes I felt like my vision was worse, but that just meant that it was changing and I had to get used to it. They say that is totally normal. So don't get frustrated if things get hard, its all part of the process 💕
I was literally diagnosed today and I am very grateful for your videos teaching me the struggles of eds and that I'm not alone 😚😚😚😚😚😚😚😚
+Jada Morris Awww welcome to the zebra herd (dazzle)! Sorry Im a bit late. Im glad my videos have been some help to you 💜 I am always here if you have any questions (even if Im a week late❤️)
What I do: I crush things as fine as I can...add warm water and mix and let them sit. Then I take out coating that didn't dissolve. I haven't clogged it yet!
+ReineDeLaSeine14 We tried picking it out after, but I still ended up with clogs. I guess either way its pretty time consuming.
pharmacist here-the second I heard "my insurance won't cover liquid meds" I thought of possible solutions. I'm sure you have, but have you worked with your pharmacist and prescribers to get prior authorizarions on the liquid form? if your condition prevents you from crushing the tabs, you should be able to fight insurance for them
:)
Jennifer Draheim That's what I was thinking (former medical office employee here lol) & I have past experience in Human Resources...another idea is to contact the Human Resources of the employer where the insurance comes through, and there should be a liaison rep for the insurance company who can get special authorization from the higher ups of the insurance co
+Jennifer Draheim I guess thats a fight Im going to have to fight. We have had so much on our plates that it wasn't really the priority, but things have calmed down a bit now so it's probably time.
So amazed by your determination and how much progress you have made Christina. Thrilled for you and clearly shows that being pro-active and putting in the hard work pays off. I'm so glad that you have a more optimistic future ahead of you. xx
+Shevonne Hutchins Thank you so very much! Im so glad that the all the work is paying off 😊
That dress you tried on in the mall was SUPER cute!! This was a really interesting video, all of the other EDS patients and all the things u and your mom thought to get your walking in!! Hope you're home OR near home and close to your bed!!
+Melissa Thomas I missed my bed so so much! Hahaha 💕
I'm so glad the vision therapy was so successful for you.
+Victoria Lafond Thank you! Definitely still a work in progress, but Its so nice to know that there is actually something that I can do to improve things. Its such a powerful feeling! ❤️
You looked so happy meeting up with friends on 4th July!! I'm glad you had a good time :)
What an amazing stay, so happy for your results and the supportive community available to you and your mom on these sojourns.
+scorpleeon Thank you! 💜
So many good things happened for you this trip! I'm so happy to see what you've accomplished.
+Dawn Cathlene ❤️
You look great! I'm so glad that vision therapy was so successful for you. Congratulations!
+Beth Wade Thank you! Its definitely a work in progress, but its so good to know that there is something I can do to improve my vision! 💜
So happy that you're able to tolerate food smells better now 👏
+Sarah Smith Thank you! So are we! WOOT WOOT!
Glad You're doing so well and vision theropy is going good You are such a strong person You're amazing all You go through and how You handle things Your Mom is awesome all she does for You Mom's are great hope Your week is good don't worry about answering comments God Bless
+Paula Castle Thank you! 😊 And yes, my mom is pretty amazing ❤️
I'm so happy for you that you can can walk for 30 minutes. I cannot walk for much myself. It had to be a quick trip to the store to walk. I usually use their motorized cart. I have so much pain especially hips. I had to buy a rollator. You are inspirational.
+Jessica Tieking Boy, let me tell ya, it still isn’t easy, but a couple years ago I couldn’t take 2 steps. We all start somewhere. And unfortunately its a lot of up and down. All you can do is your best 💜
Yeah, I know. Sometimes it's really hard not to compare myself to others especially fellow EDSers. I tend to think since they can do something then I should too. I walk at the store on our shorter trips. I still have to use a rollator now but it's my walking. But it still use their motorized cart on our longer trips to get groceries. It's my best. ^_^
yes! vision therapy was a success! 🙌🏻😁
+misty williams Its definitely still a huge work in progress, but I am getting there! I am already planning for two more weeks of it in September 😊
Why haven't you responded to the comment I left one second ago?!? lol j/k you do what you can do & what you do is a lot! I don't know how you can take the time to edit your videos, add music & graphics & can get through all that without getting exhausted!
+Darla Dixon 😂😂😂😂😂 Im slightly late, but hey, Im here. Im getting my extra vision therapy in 😉
for the pill crushing if u have capsals try cutting them in half then dumping out the powder
+Mackenzie Powell I wish they were capsules! That would make my life easier lol
Christina Doherty could u ask for capsel?
washing off pill coatings with warm water before crushing works really well :)
+Tara Feeley Interesting! We have never thought to try that! may have to try that tonight
Hi, why don't you guys get a fine Sieve to put your powder through, and it would catch all the coating and bigger chunks for her to pick through?
+Experiencing Nirvana I guess we never thought to try it. She seems to like her current routine, but I think its worth a try for sure 💕
I have my vision therapy appointment at the end of the month not sure it will help but you encourage me to try
+Rebecca Rudolph Best of luck! Its definitely worth a good try! It can't hurt 😊 (hopefully)
I have awful EDS & arthritis pain before it rains, not headache so much anymore but good Lord I feel SO bad & it must be barometric pressure. I feel much better when it finally rains.
What store were you in? I've heard those back trigger therapy things are great.
+Darla Dixon Yes! Its such a relief when it finally just rains.
We got those back things from TJ Max, but im sure you can easily find them online.
My sons have both been through many many months of we call it Behavioural Optometry in Australia. They also both have Scotopic Sensitivity where they get coloured lenses to help with that, same thing with hearing, all of their sensory issues didn't work like they were supposed to. Had no idea any
of it had anything to do with EDS.
+NJSMKMMS Im so glad that you have access to these therapies for your sons. I would be very interested in the hearing aspect as well. My hearing is technically fine but I have a lot of trouble processing what I hear.
Yes, Well the sound therapy is one of the least taxing of allot of the therapeutic measures we covered. For US, it lasted much longer than many of the others. They give you specific testing to see where the weakness's are, for example, (there are specific names, but I don't remember them that
well) both of my boys had trouble hearing, when there was back ground noise, they also needed more time to process what was being said than some. Not being able to hear the differnt vowels, Also the beginnings of words like sh, ch, th, f, c, s. There were others too. There are different 'brands' of
sound therapy, the one we used was Samonas. I think now the one getting the best results is called The Listening Program. Not overly sure how it works now but it's very basically lt's listening to specially sound engineered music and sounds it was on CD's, now down loaded onto, can't remember what
congrats on no mask around food! I'm glad the Xolair is working!
+Tamber Grable Thank you! Definitely a huge accomplishment!
Well, I think learning to relax your eyes is a really good thing. It would be nice to show us some of the exercises - for some people it will resonate and help - it doesn't mean we will all go out and do innappropriate things with our eyes!
it sucks there's no better pill crusher that Will get the outer shell too. can you dissolve it in water or something first??
+Mama With A Fro I have gotten a lot of cool tips and tricks from you guys down here for in the comments. So who knows, maybe we will discover a new technique 😊
I really wish I could meet EDS patients who have as much medical involvement as me! I have met other EDS patients but the issue is that all the patients I have met are not severely effected so I find it hard to relate to them. I also totally understand not wanting to go to appointments. The past like 6 months I have had no desire to go to doctors just because I want to live my life. But I have also been NJ fed for the past 6 months and TPN fed for the past a bit over a month now and my GI system is only getting worse(Esphogheal Spasms, Colonic Inertia, Small Intestinal Dysmotility, Severe Gastroparesis, Small Intestinal Bacterial Overgrowth, Malabsorption, and now suspected pancreatic insuffiencey). So now it has all caught up to me and I 6 GI related appointments in the next month and awaiting to schedule an appointment with an out of state motility specialist. And awaiting more permanent surgeries to help provide me more longterm nutrition
Madison do you watch Cheyanne Perry, The Rural Teacake, Kathleen Gagnon, and Chronically Jacquie? They are all UA-cam channels run by EDSers who have lots of other issues
Someone else with EDS who has pancreatic insufficiency?! Holy shit, I was starting to think I was the only one. When I did my bloodwork for the GI specialist, my amylase was really really low & my lipase was at the low end of average. I've had a lot of pain in that area of my abdomen before that lead to hospitalizations but I was just "crazy". But that issue totally explains my malabsorption, motility, & IBS-like symptoms -- I also have a hiatal hernia. I still need to go see if I can get some enzyme replacements but... Right now, I'm just leading a pretty low carb/low sugar/lactose-free life & I still have problems but they're less than half of what they were.
I'm so sorry you're having issues relating to others... I'd probably be considered on the more mild end of the spectrum which actually causes me difficulty, honestly, in relating to others with the condition. I don't have POTS [some dysautonomia but it's not to that disruptive severity], gastroparesis, MCAD/MCAS, chiari, etc. So sometimes I feel like my complaints & disability are not as valid because they're not to the same extent? IDK. But I feel for you & I really hope you find the solutions you need. Good luck xx
+Madison I hope you guys will be able to find that support that you want. The dysautonomia support network has a lot of EDS people and I think they have a local chapter in every US state. Maybe you can meet people that way. And if not, theres always us here online 💕
wow that dress was made for you
I'm doing some of the Same eye exercises my occupational therapist gave me
+everything in life Good for you! Keep up the work, I know its not easy! 😘
If you don't mind me asking, are those vision exercises for strabismus? I've got it from my EDS and it's killing me, but i can't afford to see a doctor for it.
+Alec Yes some of these exercises do help that sort of problem. They help to strengthen and coordinate the focus.
Try an electric coffee grinder for crushing your pills.
+Jacque Reid Hah! Now THAT is an idea! I feel like I would lose some though? Who knows hahaha
Christina - are you ever able to wear makeup? Or does your face tend to react? xx
Molly モリー She has answered this in a video quite a while ago. and if i remember correctly she said she hasn't had really any reactions to makeup surprisingly. so she does wear it but I can't remember what kind.
Lindsay Wager thank you!
Molly モリー I'm pretty sure I've seen her video her putting on mascara
+Molly モリー Yes I do wear makeup! Mostly eye makeup. My skin doesn't really like foundation and stuff, but I am actually okay with eyeliner and mascara as long as I use allergy eye drops before and after and take it off right when I get home. My eyes so kind of burn a bit from it so I don't wear it everyday, but its not so bad that it stops me.
I always look forward to your vids! Actually, wish you would make more. Your personality is infectious! There are some other Edsers I follow on twitter and they can be so nasty, victimized and judgmental of "non-disabled" people. I think if they had a better attitude it might help them physically.
+Devon Jones I wish I made more too 😊 Ive got a few ideas and scripts written but the time and energy have just not lined up quite yet so far hahaha But there will be more!
the 5 the was my BIRTHDAY woop
+jade jewell Happy late birthday!!! 🎉😘
Christina Doherty thanks so much
👍👍👍
+Alvin Sedig 👌
Here is me after my last neck fusion:
don't worry too much about not replying to all of your comments. I know personally I'd rather know that you're taking care of yourself instead of spending all of your spoons on replies. I love the eyepatch, it's pirate Christina. hopefully she doesn't hide her treasure like sleeping Christina ;P I hope your drive e home was good, and that your mom let you get a sloth for your sister on the way back at least, considering how many sloths you had to pass over. sloths are the best.
+decharmedfreak Thank you so much! Hah, yeah pirate Christina feels like a throwback to middle school Christina who had side bangs she wore over her left eye. To this day I swear that is why my left eye is weaker than my right... my mom was actually right. 😂 And no, there was no sloth purchase on this trip. The no more stuffed animals crack down is real hahahaha. We have SO. MANY. The entire attic is probably just bins full of stuffed animals.