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So stressful to see your doctor's deciding to put you through this! It's ok to break down sometimes but always keep sharing so people around you can help you on your lows! Have you contacted that school of medicine? PS. That steering wheel cover looks so good! Where did you get it installed? I bet only hot and smart guys are doing such tasks

Love the video! I'm glad the neck massage was helpful, but understand your point about the cost. Can't wait for the next video!

Great video! Very informative! I'm so thankful for all those who have supported and helped you. Your videos are very inspirational! I enjoy watching them.

No, Mr/Ms EDS Specialist, the real question is how are YOU going to help out. Sheesh! Hang in there Bethany! And that Oat milk latte sounds amazing.

I'm surprised that was an EDS doctor. Definitely red flags there. I'm sorry that was your experience. How frustrating!

Oh my goodness, look at the cute fall stuff! I'm going to have to check that place out! Thank you for creating another awesome video! :)

This will be helpful for me as well as my niece who has hEDS. I have cEDS, but it does make things difficult for me when I’m trying to get ready to leave for the day. Especially when I’m trying to get ready for work on my days to get ready for work.

The first hospital stay with the tube the nurse said she used my pump all the time with her at home care pediatric patients and didn’t know how to use it that still bothers me because I actually did try to show her how to program the pump and she refused to take a couple minutes to get the knowledge said she knew how I was doing it wrong🤦‍♀️ first night I was unconscious and npo glucose in the 50s and I was who asked for the glucose gel so I didn’t faint or worse. Big teaching hospital and the medical advocate as I didn’t have my own so I had a hospital patient advocate who I just got told that they were too busy and didn’t have time to talk to my care team about the thankfully not life threatening in the end complications from the hospital stay. Soon I get to go back to have the tube removed as they made a decision to go against my allergy list and I have long term nerve damage, very possibly buried bumper syndrome beginning, had I not known someone who was a long term tubie I’d have a severe infection from the lack of care from the hospital and I’m begging to go to a different hospital for the upcoming procedure they’re not on board and I’m not going back to the same hospital and things aren’t going well. GI said that the only reason I’d ever need a tube replacement is if it broke or had any other complications then they would see if it would help to be replaced so 7 months later they have to remove it and I’ll have no more nutrition than I can get in by mouth due to the likely reason you made this video and for anyone else she’s not kidding it’s not every single doctor and nurse but too many to not be prepared for the worst 😔❤️❤️

Great lessons Bethany!!!

Thank you for sharing! :)

Thank you for sharing! ❤

The EDS Society has a wonderful support group, which I’m a member of. They have different meeting schedules for the day of the week. I am a part of the Tuesday group. My Aunt has a hospital bed and it’s very helpful for us when we are trying to change her or bathe her or when she’s eating her meals. I agree with you on that, it is best to leave the DX to the doctor and not trying to look to support groups for that, I have cEDS but I am not a doctor therefore I can’t do that for you. I hope you can get answers is all I can say, and I think that yes, you SHOULD be upfront with your physician. Ice- cream sounds delicious but I need lactose free ice- cream!

The WINS store is a great thrift shop and so close to both of us. Seems like anything you need, they have. Yes, keep pushing forward! I feel like here, in Canada (not that I know any other medical system) but there is a lot of inconsistencies with what doctors will tell you. Some of them have your best interest at heart and are great, others are simply self serving and couldn’t be bothered. Those ones do disproportionate harm. You really have to fight for your care and that of our family. It’s a shame but what you are doing is GREAT! Keep sharing, keep pushing forward! We got your back!!

I LOVE your vlogs! Thank you so much for sharing your story and making me feel less alone! <3

I should’ve been wearing those finger rings on my fingers as a child, now my fingers are so messed up due to subluxations during school hours and I have lots of problems with my right shoulder dislocation or subluxation easily. I use KT tape on mine and it helps. You’re Stampede is like the Kentucky Derby, Everybody is all decorated up for that and they have mini celebrations leading up to the Derby. That is a beautiful tank top ( the Naked Zebra)🦓. I have cEDS so I knew what you meant. Sending you lots of gentle hugs 🫂 from one zebra 🦓 to another!

I have felt that way at the beginning of my journey but now I know who I can trust and who I can’t trust. I trust my ACTUAL Neurologist but not his PA. I refuse to see her, I will try to get an appointment with him instead. I have EDS- Classical type. And CCI, POTS and Epilepsy. My middle nephew has tried the Carolina Reaper and he said it was very spicy but delicious. Hearing shots fired, yup that’s exactly so American 🇺🇸! Shameful but true! I am the kind of person who would prefer to meander around looking at the eyeglasses before they start popping up and asking questions about them. Luckily I don’t have a G- tube, my late father had one before he passed away in September of last year. Titus is an adorable cat 🐈‍⬛.

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I wear KAFO that I can attach a hip band so it make HKAFO .

I’m in Quebec, I have my handicapped parking card , I had to provide a medical report and couple weeks later I had to do a driving exams with my braces on .

What about sunscreen without so much perfume? Have you found anything?

I have a friend with pots, fibro, etc etc. She lives in Edmonton. Are there support groups like yours all over Alberta?

I have one and similar experience. But, I live in BC and the driver's license one is paid for by the government. I had to do a licence one a few years. It seems so expensive. (Don't forget to claim medical expenses on these)!

Thank you for sharing, my friend! ❤

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Pain itself is depressing and takes energy out of you. I am older than you and further along on my EDS journey, take it from me, don't grieve the loss of something until you actually lose it. No sense grieving twice. For as long as you can, enjoy being able to do what you enjoy. When you no longer can do that thing, grieve it, then find something new you can do to replace the loss. As long as we keep going, we're winning! 🎉

I have EDS and was diagnosed with gastroparesis after a bout of pneumonia in January, and the strong antibiotics set off/paralyzed my stomach. I couldn't digest any food! He put me on Domperidone 10mins before every meal and that got me eating again.

Great Job! It took me 10 years of fighting to get my diagnosis of EDS. I have almost all the same diagnosis as you and some more because I am older than you. Everyone knows what MS is, once I learned everything involved with EDS I wondered WHY doesn't anyone know about this??? Thank you for bringing awareness.

Proud of you for sharing. ❤

What medication did your doctor put you on for gastroparesis? I'm getting a GES done this month, and I'm thinking I may have the same diagnosis.

What did they give you for your results

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I was just diagnosed with endometriosis last month but before that I was diagnosed with gastritis last year. Thanks for sharing! I totally relate!

Thank you for sharing your story ❤

I love magical fish

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