Vlogging with EDS: Vision Therapy, July 4th, and Pizza Night! | Week 35 

+JuneBugSmuggler She truly is 💕

+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 💕

+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

+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 💕

+Kellie Tipton They sure are! Superwomen for sure! 💕

+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❤️)

Lauren Doherty 😂😂 yes

+Lauren Doherty Mom, Lauren is logged in on your laptop. You need to log into your account 😂😂😂😂

+ReineDeLaSeine14 We tried picking it out after, but I still ended up with clogs. I guess either way its pretty time consuming.

+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! ❤️

+Shevonne Hutchins Thank you so very much! Im so glad that the all the work is paying off 😊

+scorpleeon Thank you! 💜

+Dawn Cathlene ❤️

+Sarah Smith Thank you! So are we! WOOT WOOT!

+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! 💜

+Melissa Thomas I missed my bed so so much! Hahaha 💕

+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 😊

+Paula Castle Thank you! 😊 And yes, my mom is pretty amazing ❤️

+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. ^_^

+Tara Feeley Interesting! We have never thought to try that! may have to try that tonight

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.

+Mackenzie Powell I wish they were capsules! That would make my life easier lol

Christina Doherty could u ask for capsel?

+Tamber Grable Thank you! Definitely a huge accomplishment!

+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 💕

+Rebecca Rudolph Best of luck! Its definitely worth a good try! It can't hurt 😊 (hopefully)

+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!

+Darla Dixon 😂😂😂😂😂 Im slightly late, but hey, Im here. Im getting my extra vision therapy in 😉

+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.

+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.

+Alvin Sedig 👌

Here is me after my last neck fusion:

Madison do you watch Cheyanne Perry, The Rural Teacake, Kathleen Gagnon, and Chronically Jacquie? They are all RU-vid 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 💕

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

+everything in life Good for you! Keep up the work, I know its not easy! 😘

+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 😊

+Jacque Reid Hah! Now THAT is an idea! I feel like I would lose some though? Who knows hahaha

+Alec Yes some of these exercises do help that sort of problem. They help to strengthen and coordinate the focus.

+jade jewell Happy late birthday!!! 🎉😘

Christina Doherty thanks so much

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.