How We Decided It Was Time For a Wheelchair w/ ALS and EDS
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- Опубліковано 4 гру 2024
- PART 2 OF 2: In this video, we discuss what was the process of getting a power wheelchair, what were the events that led up to needing a power wheelchair, and navigating the medical world as chronically ill people.
Part 1: • Why We Use Power Wheel...
Lolo's video: • CONFIDENCE AS WHEELCHA...
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Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.
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I really appreciate seeing chronically ill people talking about using wheelchairs. I feel like a fraud using mine because part of me still thinks I would only need one if I had a spinal cord injury. But it's not true. I really need mine. I don't know why I can't accept it. Anyway, thanks for making this.
Nearly 3 years of wheelchair use and I still feel this way sometimes... then I remember how I’d feel if I didn’t use my chair. No comparison.
i guess im randomly asking but does someone know of a way to log back into an Instagram account..?
I was dumb lost my account password. I love any help you can offer me
@Rene Aldo Instablaster :)
@Jaxxon Leighton thanks so much for your reply. I got to the site thru google and Im trying it out now.
Seems to take a while so I will reply here later when my account password hopefully is recovered.
@Jaxxon Leighton it did the trick and I now got access to my account again. Im so happy:D
Thanks so much, you saved my account!
I have the same experience of my mom telling me “I get that all time” so I thought It was normal to be in pain all the time, and loose vision and almost pass out from standing up.
Tyler Is a Cactus Same! I never even considered like hmm....maybe it’s just an issue that’s genetic until very recently!
It is not normal, I have been in a lot of pain from stnadin and walking so I will go to a doctor to being getting evlauated for EDS And HSD Tomorrow
Those beliefs about just somehow being weaker than everyone else and not having figured out how to tolerate “normal” things... so, so relatable. I think a contributing factor for me was also people had gotten frustrated with me and disbelieved and scoffed at my complaints (even when things were really bad) and that really messed with my brain. They just thought I was complaining for the heck of it or to get out of things or every other reason in the book rather than stopping to consider believing me. Getting mobility aids was a fight and a victory for me too. I knew how much it would help my health and my quality of life.
5:55 “I kind of lived for a long time under the assumption that everybody was in pain and I was just weak. I thought it was normal to be in pain all the time. I just thought ‘I’m just a weak person who hasn’t learned how to endure heels like everyone else.’”
I had a similar experience with my depression. I thought feeling sad and hopeless was normal and other people were just better at dealing with it. And being moody was part of becoming a teenager right??? Now I have a diagnosis and I know that's wrong. But it was surreal finding out I'd been minimizing my struggles and there were actual treatments I could've had access to sooner that would help.
I have suspected EDS, and I thought everyone was In pain too, and I’m just weak :)
Related so hard. Eds unspecified type
When I first got sick all my drs said it was because I was obese. But I’ve been obese my whole life and then over night started experiencing horrible symptoms I’d never experienced before. But, yeah, sure, blame it on the weight. 🙄
SAME! I was a skinny kid, and through the beginning of my adult life. I had these symptoms but was always told - growing pains, I was clumsy, faking, depressed, etc. My worsening pain and conditions cause an increase in weight - so now they blame it on that. 🙄
When I got into a hit-and-run with a drink driver, my best friend was in the car too. We both went to the hospital. I got treated for my acute injury but she didn't. They told her that it "wouldn't hurt" if she wasn't "so fat." After she had a car hit and seriously injure her, they told her to "get over it and go to the gym." I would have put in a complaint to the Chief of Medicine and possibly sued if it was my choice.
Meanwhile, I was in the next room over with ten people working on me. It took me nearly a year to get back into the saddle, but even then it triggered my fibromyalgia so I never completely recovered.
The drunk, hit-and-run driver who ran us over and stole my health from me, was on his sixth DUI (if I remember right-it could have been seventh.) He pleaded out and got time served with more probation. He already didn't have a license or a car. He had to steal his girlfriend's car to try to kill me on the way home from the bar! You've gotta be kidding me! If you got half that many DUIs in some other countries they would have killed you.
So I was permanently handicapped, she was hurt but couldn't get help and he was free to go. Unreal!
I have cerebral palsy and I started walking independently when I was 3. Recently I just turned 25 I started using a motorized chair due to it becoming harder to walk long distance and to prevent deformities on my muscles due to cerebral palsy.
The stuff about gaslighting from doctors............ Thank you!
I always thought I was a wimp weak person too until at the doctor the nurse was astounded by my pain threshold and how low my BP was while still standing there talking to her!
Chronic illness is so damn isolating even with the right support. I'm still working on it tbh
I also bought my first canes at a drug store. Then a friend loaned me a seat/walker (loved that thing!!). Even my non-motorized wheelchair was loaned to me by a friend. Still waiting in a wheelchair ramp or wheelchair friendly apartment.
I am so grateful to find your channel! I always looking for POC and WOC with EDS. My story is very like yours so I am going through the process of getting a wheelchair as well. Struggles. Thank you for sharing this very needed information
I just got my EDS and POTS diagnoses and Annie I literally feel the exact same as you did when I was young. I thought pain was totally normal for everyone and am having a hard time accepting that it's not, but also it's really nice to know that when I was young I wasn't out of shape or lazy, I was just disabled. Thank you ❤️
I really appreciate this. With my lupus I feel like I either push myself to pretend I'm a normal person or I'm isolated in bed with no in between.
I just got my first mobility device (a walker) in hopes to even things out more and not beat myself up so much physically and emotionally.
My doctors pretty great but still kind of side eyed me when I mentioned a Walker because I'm really good at presenting as healthy/able bodied
I live in Massachusetts. I had to get a referral from my GP for a mobility assessment at a physical therapy office. They said I needed a chair. A guy from the wheelchair company came to assess my house, needs, etc. Less than a month later I had my chair. MassHealth will pay for one mobility device every five years.
I used to think everyone was in pain too. I didn’t realize no one else was until I had a conversation with my cousin and I was saying “I’m just getting weaker, I need to just get stronger mentally like everyone else and just deal with this pain.” She said “what do you mean?” I said “well everyone is in pain all the time, aren’t you?” And she said no, I was just shocked, and realized there was something wrong with me.
OOF!!! Wow.
1. I always pushed through the pain cause I was told I was "normal/nothing wrong"
2. Issues started when I was a kid and skinny. Used to be able to work out for 3 hours several days a week. Then a 30 min cardio would knock me out for hours, then days, then weeks.
3. Pain meds dont work well and forget locals - I've woke up during a foot surgery (not in pain)
4. When I use assistive braces or devises my doc a look at me weird - I'm over here like "i can be MORE MOBILE when I use them!"
5. Crutches and forearm crutches started causing issues with my hands and wrists.
6. I need a wheelchair but my age makes my dic resistant, even with my dx's - ehlers danlos, MTHFR, POTS, IIH. possible mito, and possible lupus.
7. Some times it gets so exhausting advocating. I have fired doctors when they were acting highly counterproductive to my health.
This video pops out and i just got my manual wheelchair today! Universe talking. I bought it to prevent hitting myself with concrete because weakness or pain :c
In terms of diagnosis... Anecdotally, it really seems like hEDS patients where I live (Ontario) are not getting diagnosed anymore and are instead being referred to psychiatry. My diagnosis was in 2010 but I keep hearing this. I wish I could say things are getting better. We have to do so much work to advocate for ourselves.
I relate so hard to doctors saying "You're fine" but they don't know what's wrong. I was finally diagnosed with EDS last year. I'm 35. It took years of research on my part, going through my entire medical chart and looking up things I didn't understand.
I had really similar experiences wrt thinking that my experiences were just what happened as you got older. Both of my parents are medically complex, and I grew up in this culture where pain was glorified and seen as a sign of your dedication and grit. I also thought that my constant exhaustion was normal, because the adults around me always talked about how tired they were, so I thought that being constantly exhausted was just what happened as you got older. Turns out, EDS and narcolepsy. I'm 21 and was JUST diagnosed with narcolepsy a few months ago, and it took two years of testing and arguing with my (now former) GP to even get a diagnosis of "joint hypermobility syndrome." I have all of the symptoms of EDS and dysautonmia, so now I'm on a wait list for a genetic test to confirm the EDS and see what type I have. Your channel has been so helpful, especially your video about your diagnosis process, because I've been told a lot of the same things by doctors, and I actually spared myself the pain of being sent to podiatry and being misdiagnosed because of that video.
Wow I actually felt so emotional watching this. I used to be so active and able although I had health problems with being type 1 diabetic and insulin resistant but no help from drs or professionals. Because of the lack of help I now have Painful Diabetic Peripheral Neuropathy and in the space of 2 years I'm in such chronic pain, and "disabled" now using wheelchair, stick and mobility scooter, such a huge life change and seeing you guys so positive is such amazing to see. Can't wait to watch more of your videos! Thankyou for your positivity it helped me change my thought process towards my disability!
I just ordered mine off amazon last year, not even asking my dr.
I have Pompe disease, a muscle disease. In school I was also a bit chubby and really struggled to keep up with the other kids but couldn’t. The PE teacher thought I was just lazy also. Really hurt. Of course I didn’t know I had Pompe at that time.
This was incredibly amazing to watch, I’m sorry I don’t have the best words to express how much this meant (due to brain fog and fatigue) but hearing your experience with doctors helped me feel like I wasn’t alone and I really thank you so much for that.
I would really love to see LoLo do some modelling videos because I’d love to know how to take fab photos for when I do start using my wheelchair (which I am currently in the process of waiting for)
Wow. I also grew up thinking that everyone felt my pain and I was just weak or complaining. Sometimes I still think that. It’s only when I describe something I am feeling or see videos like this that I’m reminded I DO feel unnecessary pain, and I am strong.
I absolutely loved watching you two!! I love watching annie's videos but now I have a new activist inspiration! I subscribed to Lolo. I felt her all the times she said "ya'll got me messed up" because doctors can be assholes.
I just love hearing others experiences, especially with the desecrate movements for support. I find this would be an interesting topic to explore. As a deaf person I often move towards more sound absorbing locations as I am able to hear better there. (example being a carpeted room with couches as opposed to a kitchen with tile and metal). Also an empty cup at a party will help you feel the music. Life hacks for disabled people.
I couldn't relate to this more! I also thought I was just a wimp who couldn't handle heels! I thought everyone hurt like I do... Finding out I have EDS was so liberating for me.
I had gotten a wheelchair from the classified cause I'm embarrassed to ask my doctor. Even though I have chronic pain and a few different health issues and stuff that cause a lot of pain. But thank you for talking about it cause I don't feel alone on the subject. My doctor is like talking to the wall.
All of this is too real. I’m so grateful you put this up on UA-cam. This is the first time I’ve ever heard anyone outside my own head say “I thought it was normal to be in pain all the time” that got me down to my soul. I’m still struggling with this concept bc it’s so internalized so deep. I have to consciously remind myself of this and it’s so helpful to hear someone else say it too. I haven’t even finished watching the video but I had to stop and thank you just for that. Bless your heart and your brain!
The EDS story is so similar to my own. But I'm still undiagnosed, using a chair for 8 years, my husband has been pushing me as I can't push myself. I need a power chair but can't afford the one I would need & unable to be perscirbed it as I'm only diagnosed with fibromyalgia & FND (misdiagnosis) I'm still finding it incredibly hard to gain medical support. I can't find a specialist who is experienced within my healthcare system in UK. I was going to get a chair at 5 but my mum couldn't afford it so I used a large pushchair until I couldn't & had a lot of days off school and rest days as a child. There's been misdiagnosis after misdiagnosis since I was born. The gaslighting is real!
Thank you for sharing your stories, this is an excellent video!!
I ended up having to purchase a folding electric wheelchair out of pocket. My insurance would have covered reimbursement--but only if i could get to the doctor's first, to get a prescription. Which i could not do without a wheelchair. I was stuck in my bed in my room just like you. It was horrible and traumatic honestly. I wonder how other people recover mentally from that time. I felt so powerless. I am so glad I have a wheelchair now. I wish more people had wheelchairs.
Can't thank you both enough for this series. I love both of your work but this is so on point to what I'm dealing with right now; considering buying a chair due to lack of mobility and feeling really isolated, and trying to get clearer answers from my doctors why blame all my symptoms on my current diagnosis (even though they admit it doesn't make much sense).It helps so much to hear people my age talk about these struggles and how they navigated them.
My story is so similar to your story Annie and I've just cried my way through these two videos - thank you so much
Love your videos!! would love to see more power chair videos! How you navigate, how to steer, how to handle slopes, how to handle werrd questions! Power chairs don't have much that I can see :/
I cannot express to you enough how much I needed this video. Thankyou both.
Thanks for the Infos. I am at the point with a flare and very wobbly legs, like no stability, no power. I am gonna spend the weekend with a friend in Germany, so I will need my crutches and solints, but I am googling around about a wheelchair. Would probably be more comfortable.
You ladies are so right on, on Everything you said! Thank you for sharing the truth.
25:07-25:55
Dang, Annie. I feel you just summed up my experience over these past few years in just a couple sentences.
I've been having to piece together my own care (buying my mobility aids, my shower chair, rn i'm trying magnesium to see if that'll help) because of gaslighting and dehumanization from doctors and family members and financial issues.
But hearing your story does make me feel a bit more hopeful that I'll be able to get a diagnosis someday, so thanks for sharing your story.
Anyone coping with isolation right now because of the times we are in should watch things like this.
Because being an ambulatory wheelchair user is a constant state of learning patience and carving out a niche for yourself.
The parent going "oh it's fine, it happens to me all the time!" for EDS is so relatable.
Like, I remember being 9 and telling my mom that I could not blow dry my own hair. And never questioned it again, because my mom dismissed it as something that happens to her too..
I know that feeling when you go to your Doctor and they do tests and come back with "Everything looks ("Normal")". This is why it is so important to have videos that talk in depth about what it's like to have
Un-Diagnosed Disabilities?
I know what it is like. I do now after many years of pain and many denials have some diagnosis but some of what I have had some doctors diagnosed me with other doctors have no idea what I am talking about when I bring up that I have a "Spatial Diffused Global Weakness". Most ER Doctors jaws Drop to the Ground when I mention what I have because it is Not in the Medical Text Books. There is something I discovered that most people don't understand about how doctors use to Diagnose you with. They are called "ICD-10 Codes". The way I was explained to how this works is for example lets say you have EDS take a muffin tin and put different colored beads in each cup. Lets say to have EDS you have to have 4 Blue beads, 2 Red beads, 3 Green beads. Lets say you have one less bead than what is required in ht text book then you will not get your diagnosis or you may be denied by your medical insurance for that power chair that you do need but because you can move your food an inch or stand for a minim amount of time they will say you don't need that power chair. You can be a Milla-Inch away and not get what you need when you need it. I believe that healthcare needs to be treated like a RIGHT not a Privilege. It goes well and above what you are talking abut. I know that these "Wheelchair" companies will charge the Insurance more money than it would be if you were to Self-Pay for something that you need but you end up getting DENIED and have to Appeal all of the time.
The assumption that everyone is in pain and I am just weak. YESSSS. ❤️
I’m with you Annie I thought pain was normal and all my health problems were normal. hEDs life 🦓
So I have EoE which is not very well understood even by doctors. There's a lot of "hey, here's a weird thing some EoE folks deal with, maybe it's connected?" without a real, decisive answer from medical professionals. Also, with it being an autoimmune disease, many of us have other autoimmune diseases that aren't yet diagnosed. I'm currently in the process of getting an EDS diagnosis (I have the family history so it's a matter of waiting for the VA)
While in the service I once had to have a minor surgery. I knew at this point that I woke up from anesthesia quickly/easily from my wisdom tooth removal (my dad took my to a plastic surgeon for mine) and from my esophageal scopes. Every time I was up and about less than 30 minutes after, completely awake and aware. So I guess the doctors didn't believe me when it came time for my surgery, because I woke up on the table. I always thought this was a weird metabolism or eosinophil reaction thing. It's insane to me that this is a thing for folks with EDS because I never thought about that.
“EVERYONE hurts. You’re just being dramatic/ don’t have a high pain tolerance” NAH. I’m tired of catering to this notion. The way you explained your feet is me to a T. Like I can’t even explain how seen I feel.
I started having problems/pain when I was 6. And I would go get X-rays. They would tell my grandma I was faking it/a hypochondriac. Well I wasn’t. I have hEDS. And I want to get into a chair for MY quality of life. I don’t know how to do it.
Our chairs are body parts to those who depend on them and if you would not have to wait weeks to fix a broken leg you should not have to wait weeks to fix your chair.
I felt the same way about heels!!
I know that I’m 2 years late but I can definitely relate to this. I’m still in the process of diagnosis’ and my body is constantly breaking down. To the point that, for my high school graduation gift, I asked for a wheelchair. It’s hard but I’m working on advocating for myself. If you have any ideas let me know. Thanks! -Gracie
I seriously can’t wait till we don’t need doctor, wheelchairs, pain meds, or even glasses anymore!!! What a relief it’s going to be!!!
Such honest opinions
9:24 I know a Dutch saying which is very similar.
14:44 I agree with Lolo here.
26:08 What for? This is interesting! :-)
Gotta love the reusable straw ad that I got before this video. Lmao.
I would like to comment that I also use a wheelchair when I have to walk long distances like an airport. I have uncontrollled A-Fifb. And walking makes me short of breath.
My family is extremely religious (I myself am not, at least to their extent), and they are kind of refusing the fact that I need to use my chair. It's to a point where I don't take my chair with me when I visit them, and I'll avoid them when I can't walk. It has taken me a long time to accept it, but I still feel like I'm hiding it 😞 Do you have any advice?
I need for community as my house is set up but insurance will only cover if need for home. Not community.
I thought I was a weak person too. Turns out I have a TNXB mutation and EDS.. I've had a few heart surgeries now too. I use a cane now but I've debated wheelchair or walker with seat but the walker thing... I have a lot of personal feelings about using.. its a struggle.
Annie: I’d rather buy the things I need to make myself more comfortable than pay 4x that to roll the dice with a doctor
Me, with $180 worth of medical supplies and braces in my Amazon cart right now: 👁👄👁
eeh I have heard plenty about these kind of conditions not that I think everyone's conditions are exactly the same.
I’m struggling with this right now... it’s hard.
I am currently waiting on my wheelchair to get here I have spinal cerebellum attaxia
I wish I was in this video. We need to meet up.
I have a electric mobility scooter beause of Sjogrens and alot of arthritis. Fibromyalgia
interesting video
I currently use a manual wheelchair and have trouble with the front castors catching in elevator door gaps and every little crack in parking lots. I am always afraid of being thrown forward when I hit a large crack. And I get tired of having to turn around to back into elevators. Is this a problem with power chairs also. Is there something to watch for when choosing a power chair? I noticed many of the latest light power chairs have small front castors.
is New Jersey Kentucy friendly
I ALSO thought everyone had pain and I'm just weak, and it's because of all the memes about ageing and back pain!
I had to buy my wheelchair
how do you find out if your insurance will pay on a motorized wheelchair? Is it all right to call and ask if they cover it?
Yes absolutely! When I got prescribed a power chair, I talked with my insurance about my options; they could only get me a large powerchair that didn't come apart or fold. I let them know that I still wouldn't be able to leave my house with that chair because I didn't have an accessible house or an accessible vehicle and they basically shrugged and said that's all they could provide. So I spend at least a year mostly at home and in bed due to not being able to get around without a powerchair, it was like this until I could fundraise the money to get the one I needed.
@@theannieelainey Thanks for the reply. Figures... that even if they pay some on it, it wouldn't be the one I want or need.
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Who disliked this video??
I'm in a wheelchair myself mine is fully made just for me colour wheels can u pimp ur chair to ur own likes dislike