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Disability with Soleil
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Добавлен 10 май 2020
I'm Soleil I share my journey with Ehlers-Danlos Syndrome, Gastroparesis, Postural Orthostatic Tachycardia Syndrome, Endometriosis, Fibromyalgia, Chronic Pain, and what it's like to live with my disabilities.
Wheelchair & Assistance Dog in Public Bathroom
My first time taking my assistance dog out in public. See what it's like for me to use my wheelchair in a public bathroom while juggling my service dog in training.
You can follow my assistance dog on Instagram @gandalf.thegreatdane
#assistancedog #servicedog #wheelchairlife #chronicillnessblogger #ehlersdanlos
You can follow my assistance dog on Instagram @gandalf.thegreatdane
#assistancedog #servicedog #wheelchairlife #chronicillnessblogger #ehlersdanlos
Просмотров: 325
Видео
What I Eat in a Day with Gastroparesis, POTS and Ehlers-Danlos Syndrome
Просмотров 5492 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
What I Eat in A Day with Gastroparesis
Просмотров 3312 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Getting My First Wheelchair as an Ambulatory Wheelchair User
Просмотров 1,6 тыс.2 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Idiopathic Anaphylaxis and Allergic Reactions with Ehlers-Danlos Syndrome -MCAD Mast Cell Activation
Просмотров 3292 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Choosing a Wheelchair for POTS, Ehlers-Danlos and Non-Epileptic Seizures
Просмотров 8 тыс.2 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Salt Pills for POTS Treatment - Postural Orthostatic Tachycardia Syndrome
Просмотров 4062 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Gastric Emptying Study - Gastroparesis and Ehlers-Danlos Syndrome 2020
Просмотров 2582 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Ehlers-Danlos Syndrome Day in the Life - 2020
Просмотров 3892 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Mast Cell Activation Disorder MCAD Feb 2020 Day in Life
Просмотров 912 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Feb Week of Life - Chronic Illness - Ehlers-Danlos Syndrome
Просмотров 572 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
6 Week Hysterectomy Recovery Update
Просмотров 2,6 тыс.3 года назад
Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringing awareness to and reducing stigma towards living with disabilities, experiencing ‘invis...
Ehlers-Danlos Syndrome Diagnosis | My EDS Journey | Just Soleil
Просмотров 2323 года назад
Ehlers-Danlos Syndrome Diagnosis | My EDS Journey | Just Soleil I was diagnosed with Ehlers-Danlos Syndrome or EDS in January of 2020. I was 24 years old and had chronic symptoms for over 10 years before being diagnosed. I also got a diagnosis of Postural Orthostatic Tachycardia Syndrome or POTS with the potential of having Mast Cell Activation Disorder. There were other signs and symptoms that...
Life With Chronic Illness and Disabilities Day in the Life Wig Haircut Vlog | Christmas 2019
Просмотров 1103 года назад
12.25.2019 It’s December 25rd 2019 and I’m giving my new wig a haircut and chilling out. Join me, Soleil, on my journey empowering those with disabilities and chronic illness. I share details of my daily struggles and triumphs, medical symptoms, mental health, chronic pain, medical treatments, doing my best and staying positive Subscribe and connect through comments. I’m passionate about bringi...
How to Handle Life With Chronic Illness & Disabilities Day in the Life Vlog | Christmas Eve 2019
Просмотров 603 года назад
How to Handle Life With Chronic Illness & Disabilities Day in the Life Vlog | Christmas Eve 2019
Chronic Illness | Meet My Pets | Hermit Crabs | Service Dog In Training & Emotional Support 12.23.19
Просмотров 223 года назад
Chronic Illness | Meet My Pets | Hermit Crabs | Service Dog In Training & Emotional Support 12.23.19
Chronic Illness Life | Health Update 12.23.19
Просмотров 623 года назад
Chronic Illness Life | Health Update 12.23.19
Vegan Protein Smoothie for Chronic Illness
Просмотров 264 года назад
Vegan Protein Smoothie for Chronic Illness
Rheumatology Appointment | Life Before Diagnosis of Ehlers-Danlos Syndrome & Gastroparesis 12.19.19
Просмотров 3134 года назад
Rheumatology Appointment | Life Before Diagnosis of Ehlers-Danlos Syndrome & Gastroparesis 12.19.19
Life Before Ehlers-Danlos Syndrome Diagnosis | Hysterectomy Update | Just Soleil
Просмотров 2024 года назад
Life Before Ehlers-Danlos Syndrome Diagnosis | Hysterectomy Update | Just Soleil
Protein Smoothie for Chronic Illness | Just Soleil
Просмотров 264 года назад
Protein Smoothie for Chronic Illness | Just Soleil
Service Dog Training | Chronic Illness Day Vlog | Just Soleil
Просмотров 524 года назад
Service Dog Training | Chronic Illness Day Vlog | Just Soleil
Ehlers-Danlos Syndrome Meditation | EDS Physical Therapy | Just Soleil
Просмотров 1514 года назад
Ehlers-Danlos Syndrome Meditation | EDS Physical Therapy | Just Soleil
Chronic Illness Vlog | Morning Routine | Just Soleil
Просмотров 484 года назад
Chronic Illness Vlog | Morning Routine | Just Soleil
Chronic Illness Day in the Life | Seizures, Ehlers-Danlos Syndrome, Dysautonomia, Raynaud's 12.05.19
Просмотров 2,4 тыс.4 года назад
Chronic Illness Day in the Life | Seizures, Ehlers-Danlos Syndrome, Dysautonomia, Raynaud's 12.05.19
Chronic Illness Problems | Idiopathic Anaphylaxis Recovery & Gastrointestinal Issues 12.06.2019
Просмотров 2114 года назад
Chronic Illness Problems | Idiopathic Anaphylaxis Recovery & Gastrointestinal Issues 12.06.2019
4 Minute Guided Meditation | Just Soleil
Просмотров 204 года назад
4 Minute Guided Meditation | Just Soleil
LAVH Recovery Week 2 | Incision Opening, Pain, Smelling, Sex | Hysterectomy Update 12.02.2019
Просмотров 10 тыс.4 года назад
LAVH Recovery Week 2 | Incision Opening, Pain, Smelling, Sex | Hysterectomy Update 12.02.2019
LAVH Recovery Week 2 - Hysterectomy Update | Just Soleil
Просмотров 1364 года назад
LAVH Recovery Week 2 - Hysterectomy Update | Just Soleil
Hysterectomy Recovery Week 2 - First Update | Just Soleil
Просмотров 4624 года назад
Hysterectomy Recovery Week 2 - First Update | Just Soleil
Power assist is such an individual thing - for me, I needed the lightest possible option because I live alone, go out alone, and I have to break down my chair every time I put it in the car, so, after exploring all the options out there, I determined that a SmartDrive was the right fit for me (and you can in fact go backwards with a SmartDrive on your chair, it just won't push you backwards), but I know other people where their needs and options are different, and so they went with the power assist wheels. It just depends on the person. What type of chair and power assist did you end up going with? I've got an Aero Z and SmartDrive (my next chair, which I can get next September, will probably be a ZRA, because I need the weight reduction that titanium will give me).
Excipients, dyes, fillers in meds, both OTC and prescription, often tend to cause more problems for some people than just about anything else. The irony and stupidity, of putting that stuff in meds for people that are hypersensitive, is just stunning.
Finally making some progress with getting a diagnosis, got a rheumatology referral for the first time! I’m nervous but optimistic, been navigating this since October
I enjoy your videos
i hope in 2024 you are doing well
I have eds and I'm a quadriplegic and ms. I can definitely recommend the quantum edge 3 stretto with eye level. It has a much smaller wheel base. I also have the spirit autofold. Both are really good chairs
Did you experience gas or anything?
I don't think so, at least nothing that seemed out of the ordinary or worth noting. Are you experiencing gas?
@@disabilitywithsoleil well a relative had this surgery and is having a lot of issues with gas. Did you eat normally right after the surgery? Or did you wai 1 day or two?
It definitely would be fine to call the Dr and let the nurse know if they are having issues with gas and discomfort. I woke up from surgery and ate Oreos and sushi immediately there in the hospital room - so again not feeling like they have a good appetite or being nauseous could be something to check in with the Dr office about. I hope my experience is helpful!
I also had a mild odor and light bleeding the second week. Hoping it’s not an infection but won’t know until til tomorrow. But it’s so uncomfortable sleeping because it feels like an ocean in my belly
I hope it wasn't an infection! The healing and symptoms will get better.
Thanks
Does putting the salt in capsules help with bowel irritation . I've been straight up licking salt or dissolving it in water. It alleviates pots symptoms, but it has a bowel flush effect that feels unhealthy long term.
I've been making my own salt caps for 8 years (I use Redmond Real Salt and a capsule machine similar to hers), and as long as I don't take them on an empty stomach (mine are unbuffered - might be able to take buffered ones on an empty stomach), I don't have any issues.
@@SnowySpiritRuby I discovered Klaralyte buffered capsules. I am in Sub-saharan Africa, so importing them is expensive, but worth my while. I still have to take them with food, or I feel. Iffy and cloudy in my head, but otherwise they have reduced my symptoms significantly. They are cheaper than other commercial salt capsules. I cannot make my own unbuffered capsules. They still irritate my system.
Thank you
Thsnks for this video. I am 6 wks post op but still in pain and uncomfortable. And sooooo tired! Dr says I am healing fine but recovery has been much harder than I envisioned!
Thank you for sharing. I'm having mine next month . 😢😢😢..I'm so worried and scared 😢
I hope it went fine for you and recovery was good 🙏
When you get older it's worse to get one.
I love you❤❤
I have loved all of your content, I’m excited to see more and you’re especially relatable. You’ve got this 😎.
Salam, I am from Morocco, I am married, I have a child, I have intestinal paralysis, I visited more than one doctor and I did not find it. I have lost a lot of weight. My psyche has always been destroyed. I always feel full and heavy and vomit.
So I have EDS and POTS as well and am trying to find somewhere to get fitted for a wheelchair in my area, this video was super helpful in giving me an idea of what I want to get. But I noticed you wear ring splints, and I do as well, has that interfered with using a wheelchair for you or damaged the splints at all? I use oval 8's right now but am waiting on getting some metal ones with insurance and I would hate to spend money on them and they get messed up. Thanks!
Thank you for explaning the diffrence between the chairs and what they are able to do
At last. Someone else who gets excited about receiving an Amazon package 📦 lol. Thank you again for making this brilliant video xxxxx ❤
I’ve had fibromyalgia for over 20 years and slow swimming is the best exercise, that’s if you have any bloody energy to do it. I have gastroparesis too and apparently it’s gastroparesis that gives us night sweats. Big hugs and thank you so much xxxxxx ❤
I don’t know where you live, but there is a dysautonomia specialist in Toledo, Ohio. They have an incredible program. I haven’t been there yet, but I got really fortunate to find a neurologist who has patients who have been treated. It’s unfortunately, treatment came far too late for me. I have just a few years left to live because I developed restrictive lung disease from chronic atelectasis (partial to full lung collapse). I was diagnosed at 13. I’m 53. Don’t let them tell you it’s all in your head. Don’t let them tell you it’s nothing.
I had key hole surgery
I had a Hysterectomy 23rd March I felt awful for the first and 2nd day Had to stay at my mums Shoulders felt sore not feeling great !
That is really tough. My mom stayed the afternoon with me after my surgery and then my husband had a few days off of work to help me out just in case.
Thank you for sharing April 8 was my surgery date best thing I ever did!!!
do you have any tips for those looking into getting a wheelchair for EDS and POTS?
Talk to your doctor about it and make sure you are seeing a specialist who works specifically with EDS and POTS patients. You'll usually have to have tried multiple treatments and have specific documented diagnosis. You can purchase a simple wheelchair yourself in Amazon for $100, if someone will be pushing you. You also will want to call your medical insurance and ask them how they determine coverage for durable medical equipment like wheelchairs and how much you will have to pay for it. I hope this helps!
I have a friend with this syndrome. ❤️ You are so brave. ❤️ I am cheering for all of you warriors who wake up and face this everyday.
I'm having a hysterectomy next week I hope my recovery goes as smoothly as yours did
Wishing you the best for your surgery and recovery!
@@disabilitywithsoleil thank you
I have a tilt table for the second time in two days
Just got my custom wheelchair on Wednesday! The frame is neon pink and it is a Tilite as well. I have a power assist too! :-) Love your channel. :-) I have a lot of the same conditions as you.
Congratulations! 🎊 That is so huge for you 💕 Thank you for such kind support 🤗 I'm sorry you have to deal with these conditions. I have found it to be 100x better when I can connect with other people who have the same experiences.
Hi
Thanks for sharing. I'm almost two weeks post op. It's good to see others journey.
Foul odor, blood or spotting I would run to the doctor!!!!!!!!!!!
spotting is normal but foul smell, no. Also, every woman should take natural laxatives such as psyllium fiber or breakfast cereals high in fiber every day with plenty of water a d whole fruits full of fiber.
Did you have the gardasil vaccine by chance?
Brilliant and I love your dog. I have a dog. She lives with our house rabbit! He has his own here called rabbit special needs he pretty cute. This is fantastic and really interesting thankyou
That is wonderful! As a child I always wanted a house rabbit :) Thank you for the encouragement! I just subscribed to your channel as well so we can cheer one another on.
You'r strong. Eat healthy food to stay health and be safe. Hope you'r getting better. I'll Pray for your health. Love from Malaysia😘😘
Thank you so much. Your love and support from across the world is appreciated and gladly received.
wow. well you are inspirational and lovely to watch. much love
I hope you get some relief and comfort! I just started making videos about my struggle with EDS and other health issues!
Thank you for your encouragement! I just subscribed to your channel...I'm excited to see how we both are able to share our lives with Ehlers-Danlos Syndrome and support one another and others on their journey.