Wheelchair Evaluation and EDS

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I will share more about the wheelchair process as it y folds but... for now... Discussing things we all encounter when interacting with friends or the general public such as ignorant or uninformed comments and people wanting to be helpful but not knowing how... patience and kindness are needed for sure allowing us all an opportunity to grow and advocate for our needs. Speaking of advocating for our needs... I thought you might like to see a bit of the journey of gaining wheelchair access for ambulatory wheelchair use. I’m still unsure of how I feel about this stage of EDS life but I will move forward and see what happens... what was your experience in this process with insurance? Here are my thoughts and evaluation!
Here is the update of next steps:
Wheelchair Eval update and Process New Normals • Wheelchair update and ...
Ehlers Danlos Society
www.ehlers-dan...
More info on EDS
www.ehlers-dan...
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@astoryrewrite

Опубликовано:

12 сен 2024

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Комментарии : 21

@mado11373 4 года назад

I'm 22 and have Lupus and POTS and just started the process to get a chair because I've lost nearly all of my independence at this point. Loved seeing this whole video. Thank you for sharing!

@astoryrewrite2268 4 года назад

Wow Maddie! That must be so hard!!! If there’s anything I can help by sharing I am happy to share. I am wishing you many warm thoughts for a calm easy process!!! Don’t give up!

@victordrake6013 3 года назад

A tip : you can watch movies on flixzone. Me and my gf have been using it for watching loads of movies these days.

@fisherlee3262 3 года назад

@Victor Drake Yup, I've been using Flixzone} for months myself :)

@zabm3502 4 года назад

Would like to hear more of the process of getting a chair and EDS related considerations. I've had a loaner chair for 2 weeks that I've been using around the house. So far my experience with accessing services is that they don't know what to do with me since I'm relatively young (35), can walk short distances. They don't understand how EDS affects the body. I have trouble sitting up straight for very long, my energy is very limited, my arms are weak, my left collarbone is currently displaced. I dream of having a chair with a reclining back, but this doesn't seem to be an option they are aware of. The easiest method I've found is foot propelling. After 2 weeks of using a wheelchair I've noticed my abs are getting used way more. I have an appointment with the occupational therapist later this week to get measured for a manual chair.

@astoryrewrite2268 4 года назад

Wow! To have a loaner chair sounds really helpful! I have found this process to be very lengthy. It’s going on a year now for me... I’m waiting each day for a phone call from the company to hear back on the next steps...

@zabm3502 4 года назад

@@astoryrewrite2268 Oh wow. A year is a really long time to wait! Having a loaner is definitely helpful. It's allowed me to be upright much more during the day so I haven't been completely deconditioned. I might be renting it at this point though which is pricey for for the cost of the chair (it's the folding kind that they have at the hospital and airports). I expect the process will take a while once I get measured. Have you been fitted for your wheelchair yet?

@astoryrewrite2268 4 года назад

It’s been surprising I never really imagined myself being here you know... you are brave!

@zabm3502 4 года назад

@@astoryrewrite2268 I didn't think I'd be here either. 6 years ago I was skiing, rock climbing and playing ultimate Frisbee. I'm pretty happy with my life. I'm so done with isolation though. 🤣

@astoryrewrite2268 4 года назад

Hey Liz, I thought big you as I posted and update from this video and then the delivery of the wheelchair. If you happen to check them out Id love to hear from you! 💜💜💜

@user-le8xi9xi2i 3 года назад

I began loosing my hearing 3 years ago, when I was 20. I was just starting med school and it was a massive blow. People kept saying “it could be worse” “you still have some hearing,” “you can get by with hearing aids.” I know they were trying to be nice but it just felt like my grief was being brushed aside and I was expected to just move on immediately. It took a long time for me to come to terms with my new normal and I think I would have gotten there sooner had people not been so quick to invalidate my feelings. I know it could be worse - but it could be a hell of a lot better.

@astoryrewrite2268 3 года назад

Your story hurts my heart, it’s exactly how so many are challenged with that phrase. It isn’t generally people’s intentions but it’s their lack of awareness and lack of intentional connecting or speaking more specifically that bring further pain. I am beginning to think that phrase to be a bit ableist. It could always be worse for anyone that doesn’t make the reality not terribly bad... we can’t compare our situation to the could be’s! All we have perspective on is the worst we have experienced. I am sorry you faced this. You must be so strong. Even if you never wanted to be. 💜 I am glad you found my video and share your story. Thank you. 💜

@user-le8xi9xi2i 3 года назад

@@astoryrewrite2268 Thank you 🙏 I have come to terms with it now and I think it’s helping me empathise with my patients. Your channel is fantastic. Thank you for sharing your experience.

@astoryrewrite2268 3 года назад

Thank you! I am always open to thoughts and ideas from others! 💜

@bjandmercy 3 года назад

I love your outlook on life. I have CRPS, chronic fatigue syndrome, among other chronic illnesses and I have the same feelings about like that you talked about in this. I also prefer the texting to talking on phones even though it's hard for me to see the messages sometimes lol.

@astoryrewrite2268 3 года назад

Thank you so much! You really do have to advocate for our needs even within ourselves!!!

@Shorty24136 4 года назад

NGL I am an EDSer and I use the phrase 'it could be worse' all the time, not to devalue mine or others experience but to put some perspective into it... Maybe just a different view on the phrase. I guess I don't see the point with being upset about something someone said... Water off a ducks back and all... I understand this can be easy to say and hard to do however...

@astoryrewrite2268 4 года назад

I can see what you are saying and it can be different for each person hearing or experiencing the communication. For some it is devaluing depending on their history and care. Life can be complicated 🙃💜☺️

@LaynieFingers 3 месяца назад

I say it in regard to myself, because it keeps me aware. For other people, I try to avoid it... because what feels like no big deal to me could literally feel like the end of the world, and a flippant "could be worse" can feel like a slap in the face. It's not a competition- just because someone else had both feet torn off is technically worse off than someone who had only one foot ripped off, but that doesn't mean one-foot isn't in a world of pain.

@othfanatic1 2 года назад

I get migraines all the time and also I get pains in back and my hips but my aunt no matter how I am feeling says that I need to get up into my wheelchair and outside

@astoryrewrite2268 2 года назад

I find it difficult sometimes to force myself outside but even 15 min of sunshine does help me feel more alive.