Incurably Awesome

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@mybabyfarphie07 Ай бұрын

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! :)

@shannongreenwell1278 Ай бұрын

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.

@maddiehalsey9058 Ай бұрын

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 😔❤️❤️

@brassitaschannel-tu5yw Ай бұрын

Great lessons Bethany!!!

@mybabyfarphie07 Ай бұрын

Thank you for sharing! :)

@amandashepherd4952 2 ай бұрын

Thank you for sharing! ❤

@incurablyawesome2024 2 ай бұрын

@@amandashepherd4952 Thank you for subscribing and supporting! 🌻

@shannongreenwell1278 2 ай бұрын

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!

@incurablyawesome2024 2 ай бұрын

Thank you so much for being so supportive. I notice all of your comments under my vlogs, and you are always so kindhearted and supportive. I really appreciate you! Thank you for being incurably awesome! ❤

@brassitaschannel-tu5yw 2 ай бұрын

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!!

@incurablyawesome2024 2 ай бұрын

@@brassitaschannel-tu5yw Awww, thank you so much! I'm so grateful to be in such a positive and supportive community! You really brightened my day and gave me more motivation and inspiration to keep moving forward. Thank you for being you 🌻

@mybabyfarphie07 2 ай бұрын

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

@shannongreenwell1278 2 ай бұрын

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!

@incurablyawesome2024 2 ай бұрын

Thank you so much for your support and kindness! I didn't even know about the finger braces until two months ago. Thank goodness for social media and innovations! 🦓

@shannongreenwell1278 2 ай бұрын

@@incurablyawesome2024 you’re welcome and definitely 💯!

@shannongreenwell1278 3 ай бұрын

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 🐈‍⬛.

@amandashepherd4952 3 ай бұрын

❤❤❤❤

@patrickpat8878 3 ай бұрын

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

@incurablyawesome2024 Ай бұрын

I meant to comment on this sooner, but that sounds really interesting. I noticed my hips are unstable and pop out alot, so I'll keep this in mind. Thank you so much for sharing! I'm guessing they help you out alot, hey?

@patrickpat8878 3 ай бұрын

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 .

@nadineevans5195 3 ай бұрын

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

@incurablyawesome2024 3 ай бұрын

Fortunately, sunscreen is the one thing that doesn't bother my skin. I have been using Hawaiian Tropic Sheer Touch 50+. May I ask what you use?

@nadineevans5195 3 ай бұрын

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

@incurablyawesome2024 3 ай бұрын

There might be some on Facebook!

@nadineevans5195 3 ай бұрын

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)!

@incurablyawesome2024 3 ай бұрын

Absolutely! Keeping all of my receipts 😬

@amandashepherd4952 4 ай бұрын

Thank you for sharing, my friend! ❤

@amandashepherd4952 4 ай бұрын

❤❤❤

@amandamccallum6796 4 ай бұрын

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! 🎉

@amandamccallum6796 4 ай бұрын

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.

@amandamccallum6796 4 ай бұрын

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.

@incurablyawesome2024 4 ай бұрын

Thank you so much for sharing your story, and for your kindness. We can keep pushing forward together! <3

@amandashepherd4952 4 ай бұрын

Proud of you for sharing. ❤

@incurablyawesome2024 4 ай бұрын

Thank you so much, Amanda! It took a lot for me to share all of this. Sending positive vibes your way!

@Dancerstar852 5 жыл бұрын

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.

@Dancerstar852 5 жыл бұрын

@@incurablyawesome2024 Did you get the POP procedure yet? I hope you're doing okay.

@Dancerstar852 5 жыл бұрын

@@incurablyawesome2024 Oh okay! I hope everything goes well! :)

@Dancerstar852 5 жыл бұрын

@@incurablyawesome2024 Take your time! Your health is priority!! I look forward to your vlogs when you're feeling better. Best wishes for your upcoming procedure! I really hope everything goes okay and you feel better! :)

@incurablyawesome2024 5 жыл бұрын

Thank you so much! Hope you have a great day :)

@cocolyn5513 5 жыл бұрын

What did they give you for your results

@incurablyawesome2024 5 жыл бұрын

Hi Lyn, thank you for reaching out! I am SOOO far behind with my vlogs - I do apologize for this. I have been trying to save up for a vlogging camera. This GES showed Gastroparesis, but alot has happened since then! I also have major issues with my colon and small intestine. Once I purchase my camera, I plan on updating everyone and creating helpful videos on life with multiple chronic illnesses. I want to interview specialists, make recipe videos, helpful tip videos, etc. The past few months have taught me what matters most in life and I want to try and cheer people up when they watch my videos. It is important to stay positive even during the bad days. Thanks again for reaching out. Hope all is well your way <3 - Bethany

@cocolyn5513 5 жыл бұрын

Awe , wow so sorry were u having problems with your colon before or after u got the test done ?

@incurablyawesome2024 5 жыл бұрын

I was having issues with my colon & small intestine before the tests. I had symptoms, but I didn't know why I was having those specific symptoms. The tests made everything more clear & my Motility Specialist was able to explain things better after the test! The lesson here is to never brush off your symptoms! Also report new symptoms to your specialist! Hope you are having a great day :)

@amandashepherd4952 6 жыл бұрын

❤

@ashleygressel5628 6 жыл бұрын

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