How We Decided It Was Time For a Wheelchair w/ ALS and EDS #AmbulatoryWheelchairUsersExist


– [Narrator} Check out
part one for why we use power wheelchairs as as
someone with ALS and EDS. Part two, deciding factors
on needing a power chair and the process to begin using one. – So I wanna talk about
what was the process of actually getting our wheelchairs as chronically ill and ambulatory people. – Yes. – Because I think that
a lot of people think that they have to wait for a doctor to prescribe them with a chair, but there’s actually a few different ways to, ya know, navigate the situation and there’s a lot of details that people just are unfamiliar with and, don’t even know how to, ask. – Yeah, yeah. – So, what was your process? How did you bring it up to your doctor, like the possibility did you even did you even talk to your
doctor before trying to get one? What was your process with that? – So the memory on that is a little hazy, because it happened when I was around, 18 years old, I’m 32 now, so that’s some years ago. But I do remember working with the school nurse at my high school and she was actually
the one who recommended that I at least try it
when we went on our, I don’t know, cause you’re from Florida, right? – Mhm. – Okay, so in California, I don’t know if they still do it, but at the time all of the
seniors from high school would take a road trip to Disneyland and we would have Disneyland to ourselves, like, for one whole night,
– So cool. – of all these high school seniors – Oh yeah, like grad night. – Yeah, grad night Disney, okay so you guys do have grad night. Okay so grad night Disneyland,
so she was just like, “use the chair,” because
Disneyland is massive, so she was like, “use
the chair, test it out, “see if this is something that
you think that you would like “when you move to LA.” So I was like, “okay, cool.” And so I first test drove the chair during grad night at Disneyland. Turned up, it was like the best thing ever in life, cause I was like “oh my God,
I can go this fast, finally!” – Yeah. – And so I just felt
really, really liberated. – Yeah. – And then, of course, ya
know, cause my friends, we don’t know how to act, they were on the back of the
chair, we were turnin’ up we were hittin’ donuts,
it was like a whole, (laughter) it was a whole thing. So then after that, I
explained to her, I was like, “yo, this is something I’m
definitely gonna need.” And so, if I remember correctly, my mom and I, with the recommendation
from the school nurse, went to our doctor, and just pretty much said, “we need to get Lauren a wheelchair “in Southern California, insurance, “what’s up, like hook her up” kinda thing. And the next thing I know, I got my wheelchair and moved to LA and then I had a wheelchair ever since. And so pretty much, from my understanding is, and this is with my current insurance, is that insurance will cover, the expenses of repairs and buying a new one and all that stuff for one motorized wheelchair. And so once your chair is at the point of, okay, you’re gonna need a new one, because it’s just like a car
or any other device that, over time will break down, you just gotta get a new one, then that’s when you
just go to the insurance, you don’t even have to deal
with the doctor anymore. You may need a doctor’s note to say, “hey, she does still need a wheelchair,” but that’s about it. And then insurance will cover
the majority of the cost, at least my current insurance covered the majority of the cost and then they’ll bring you a new chair. – Okay, – Yeah. – All of these experiences are different because that’s nothing like what I, – Yeah, and you can consult with a wheelchair repair company, Some of the popular ones in Southern California
is New Motion is one, another one is National
Seating and Mobility. So between those two, you consult with them, and then they ask, “okay, now that you’re at
this stage in your life “do you need a chair that tilts? “Do you need a chair, ya know, that spins around? “Do you need this, do you need that?” and whatever features you need, they’ll get you that for your chair and then insurance will cover a majority of whatever that cost is and then, ya know, you just pay the rest, and then you just have your chair. That’s my personal experience. – Yeah, yeah. – And I know it’s not that for everybody. – Yeah, absolutely. A lot of people do share that experience. – Yeah, yeah. – Where, the medical system is helpful. – Yeah, well in certain cases – Yeah. – cause if we get into
other realms of stuff (laughter) then when you need your chair
repaired for any reason, that’s when the drama
starts for me personally. – Right. – That’s where the drama is like, okay, y’all ’bout to really make me mad. (laughter) – Okay so for me, I felt like, so I spent a lot of time undiagnosed but still, losing abilities. – Interesting. – So this is degenerative, right? It’s expected to kind of, get worse. – Yeah, yeah, that’s
exactly what ALS is too. – I was like, what? I don’t know if it’s, appropriate language, but ya know, decline. – Yeah. – It’s expected that the
health stability declines. – Yeah. – So I spend a lot of time
pushing my pain limits. I kind of lived for a long
time with the assumption that just everybody was in pain and I was just, weak. – Interesting. – I was like, everybody else already
learned how to handle… Like, so my interpretation was
similar to, like, women in heels. Women would always complain
about being in pain, – Yeah, yeah. – While wearing heels, and so I thought it was normal to be in pain all the time. – Interesting! – Yeah, and then so, I just thought “I’m just a weak person “who hasn’t learned how to
endure heels like everyone else.” – Wow. – Yeah. – Wow, wow. That’s really, so wait when did your symptoms start? – Its a twilight zone situation. – Yeah, when did your symptoms start? – So I’ve always had, very acute symptoms throughout my life, obviously running laps in PE
would trigger my symptoms, I would get dizzy and faint sometimes, and people would just think, “you’re out of shape,” right? – Wow. – Cause also I was a chubby child, so they would always – That was always the
assumption, yeah, yeah. – Yeah. so they never thought “you’re sick,” you’re just, fat phobic stuff, “you’re out of shape and that’s why “you suffer when you exercise, right?” – Damn, okay, yeah. – And so, no one ever thought
I should see a doctor. I would have asthma attacks that my mom, we also, I think it’s cultural, (stammers) it’s poverty culture, and Latino culture, “if you’re not dying, you’re not going to the hospital.” – Yeah, oh that’s black culture! – We’re just gonna fix it. It’s just, it’s honestly
just a lot of cultures that, don’t have money, to see a doctor. – Yeah, that’s a fact. – So we would always try
to just to mend things. My mom exhibits a lot of symptoms, too. I remember growing up and always seeing her wrist in a brace. So she wore braces all the time and stuff so she was, like, “we’ll just fix it.” She was the person who when
I would take hot showers, cause I get heat intolerance too, the heat effects the way my blood moves and also makes me pass out. – Got it. – I would tell my mom after a hot shower, “mom, I’m losing my vision, I’m fainting, “what’s going on,” as a
kid, like nine years old. – Got it. – Cause that’s what
happens when you pass out, – Yeah. – the first thing that
goes is your eyesight and you’re like “what is happening?” – Yeah, yeah. – And my mom’s like, “oh,
you’re just passing out, “it’s fine, put your
head between your knees, “put an icepack on your head, “it happens to me all the time.” – Ahh, I see. -(laughs) is what she said! I was like, “oh my God!’ – Yeah, cause see, I ask why you would assume that
everyone would be in pain because me not knowing
at what age it started, because for me I was 14, so when my body went left I knew it was going left. – Yeah. – Versus you. – I’ve lived with it my entire life. – Yeah, you assuming that,
“oh the world is like this,” you know what I mean? So yeah, that, yeah,
okay, so that, I’m sorry. – I always saw media
representation of people, leaving work and having to
put their feet in hot water, – Oh yes. – like the waitresses always have to put their feet in hot water after work. – Yeah. – And so many movies, women are like, “I have to take off my shoes
after I leave the club,” or whatever, “they’re so painful,” and I’m like, “oh, everybody’s in pain. – Wow. – Yeah. – Wow, okay that’s like, boom. – Cause pain especially for women, is so normalized. – Yeah, that’s a fact, that’s a fact. – There’s even like a weird,
“pain is beauty,” right? – Yeah, yeah, “no pain, no gain,” all that stuff. – Oh I just got, angry feeling. – Yeah beauty is pain. – Okay so let’s circle back. – Sorry. – No, don’t worry, I love it. Okay, When I finally got to start
seeing doctors about it about it and being like, hey, so, all of a sudden, cause it was gradual, again I was just thinking
that I was a weak person. – Yeah. – I was at a job where I
had to wear heels for work and I would be standing
for eight hours a day. And eventually I had to tell my boss, I was like, “dude, I
cannot wear heels anymore, “please, let me wear boots to work, “I’ll bring nice boots, – Yeah. – And they were like ” Okay, fine”. So I wore boots thinking
that my problem was, – The heels. – Like I said I’m too weak for heels. I haven’t learned how to
endure them like all other people who wear heels. So it’s just the heels. – Yeah. Right. – The heels are what’s painful. So then I started using boots, and my ability to stand
just kept declining anyway. (stammers) My “Tap me out the pain is too much.” point decreased from like… Eventually seven hours, I’d be like, ” Dude, I can’t, I need a
chair, I can’t stand up anymore, the pain is too much ” and gradually, decreased, decreased, decreased until my standing
limit was just maybe 5 minutes before I couldn’t
take the pain anymore. – Oh my god. – Yeah, I was like, “Whoops, gotta see the doctor now.” – Yeah, yeah, yeah. – I saw doctors and for three
years they gaslit me and, told me that nothing was wrong with me, and that I was either
crazy or exaggerating, or I was saying symptoms
that weren’t possible. I don’t know. I have a whole video on that I’ll link it. (laughter) Around here. – Yeah. – The whole diagnosis journey. – Yeah. – When doctors wouldn’t
help me, I felt very much in the wilderness with what
my body was going through. – Yeah, yeah. – Again the mentality was,
“We have to take it upon ourselves to try and… – Yeah. – Fix our (censored) ourselves.” – Yeah, yeah. – Right. – Especially when the
doctors telling you theres nothing wrong. – Yeah. My mom buys wrist braces from
Walgreens for her wrists. Stuff like that. All my braces are from the drug store or, from a website. They’re not prescribed
because it’s actually cheaper that way. – Right. – People buy braces for sports. – Yeah, yeah. – Right. – Absolutely. – To help them endure longer in the gym. – Yeah. – When abled people buy
things, they’re cheaper. – That’s a fact. That’s a fact. -So my braces are from
drug stores and stuff. I also bought my first cane from
a drugstore and on my own. I was like, “I know that if I want to
go out with my friends. I need help.” – Something. – Right. I used a cane like a
mountain climbing stick. I would spike it into the
ground and pull myself forward. – Really? – My problem was pain. So I’m just using the cane for support. – Gotcha. – To keep me moving forward. – Gotcha, So pain killers wasn’t
something that you thought of to use first before using equipment? – Well, pain killers like tylenol
and stuff never worked on me. – Oh. – That’s an EDS too. – Got it. – Our collagen doesn’t process. Not even local anesthesia. That’s another story there too. So I eventually, the reason I even fully
started using a wheelchair I remember I went to Target
one time with a wheelchair cause I couldn’t shop. My uncle got me, or loaned me a wheelchair
that he doesn’t use anymore, because he had an operation. – Got it. – So I used that chair one
time in target, here and there. – Yeah. – Very rarely. Then I had an operation on my leg because, they thought they misdiagnosed
me with flat feet and, tried to correct that with an operation. Ultimately through that operation. – You felt everything? – Oh yeah, (laughter) I woke up and was screaming because, I could feel everything Even though the recovery
the process was just supposed to be three months and, they doctor was like “Oh
you’ll be able to walk just fine after 3 months”. There was open nerve damage. So just contact, not even pressure. – Yeah. – Contact with the floor was
this electrocuting kinda pain. – Yikes. – So I couldn’t even touch
the floor for six months. The doctor was like “I don’t
know why you’re in pain but lets see if you can
walk on it, I wanna inject local anesthesia to see
if we can numb your foot so you don’t feel your foot
and lets see how you walk on it – Yeah. – How are your bones moving” – Yeah. – This doctor took like an
hour putting 16 injections of anesthesia into my foot
because it wouldn’t take. My foot would not go numb. (laughter) – I feel like at a certain
point as a doctor you should realize, okay something aint right. – Well. – Somethings doing something different. – He had no idea what that meant, he’d never seen this before in his life. – Okay, well. I mean but still come on y’all. – It was very frustrating
for me that I was still undiagnosed at the time. – Right. – I had to do my ow
research and so it was also. The point being right, so it was this operation
that made me start using a wheelchair full time, like I said I couldn’t
make contact with the floor at all without experiencing… – Pain. – …Torturous, horrifying levels of pain . – Yeah. – Like I said I have weakness
and pain in both my legs so I couldn’t do the thing
where people use crutches. – Right, right. – Keep using one leg then the other leg. Because one leg on its own
doesn’t have enough strength to hold me up. – Gotcha. – So I have to use a wheelchair. – Gotcha. – Then I used the wheelchair
for 6 months eventually, through my own determination
which you know, no pressure on anybody else to
push yourself to this extent. I kinda shoved my foot into
the ground trying to again push my endurance with the pain, and reteach myself how to walk, and I had to do this on my
own because medicine wasn’t helping me and it was very expensive. – Sheesh. – I’m like a person who’s
totally in the wilderness with my condition. I have to figure out how to do
everything myself. – Yeah. – And eventually again without diagnosis, my abilities kept decreasing. Eventually the joints in my
arms, I couldn’t push myself on a manual wheelchair anymore. I was doing that the whole time. – Yeah. – My shoulders would dislocate. – Whoa. – When I would push my wheelchair. – Wowzers. – So now I can’t even use
a manual chair anymore. – Got it. – And I’m not diagnosed yet. Without a diagnosis. – You can’t get the wheelchair. – You can’t get prescribed wheelchair. – Exactly. – So I had to out of
pocket raise the money to get my power chair. – And this was only 3 or 4 years ago? – Yeah. I finally got my diagnoses, and along with my
diagnosis the doctor agreed that I needed a power chair. – Yeah. – And prescribed me
with a power wheelchair. – Yeah. – So that’s why I wanna emphasize, if you’re a person where
medicine is not being helpful to you. – Yeah. – It’s not worth it to
suffer and isolate yourself. – Exactly. – Waiting for them to help you. – Exactly. – You are allowed to take
it into your own hands. – Exactly. And it is a risk. Some people are like, “Don’t
risk your body without the help of a doctor.” – But they only know so much. At the end of the day too. Yeah. You know your body best. – Right. – You know, You should trust yourself
with the decision for how you’re going to live your best life. – Right. – I knew that without a
power chair, that meant that all I could really do
is be in bed all day. I couldn’t go out with my friends. I couldn’t leave my house. – Yeah. – It was very isolating. It wasn’t mentally healthy for myself. – Right. – I was getting really depressed, it felt like a jail cell. Sometimes it still does, because chronic illness. Now I have a power chair, but chronic illness ill
still keep me in bed, and keeps me isolated. – Right. – So it’s still like that but
at least I have somewhat of an option to get outta the house. When I was wheelchair-less, when I lost the ability
in my upper body to push the manual chair. – Yeah. – Was just stuck in my bed, in my room for a year. – Wow. – Yeah. – Right. – Yikes. – Yikes a lot. – You now what’s so interesting
that I find about that? Mine wasn’t as extreme, but I do remember in middle
school playing street hockey, and my legs literally feeling
like noodles afterwords, oh my gosh I need to sit down or else I can’t freakin function. I’m just so interested
all the time with people like ourselves during that
period where we’re not diagnosed, and were trying to figure it out. If there was just enough
professional support earlier how much more preserved our
bodies could be at this point – Absolutely I think
about that all the time. – You know what I mean. I’m just listening to what you’re saying. I’m like yo if they woulda
caught this (censored) when you were… Sorry excuse my language. – No it’s fine. – I don’t know if you
curse on your channel. I do it all the time. (laughter) That’s my bad y’all. I think about what if someone
really paid attention to what you were going
through in middle school. Your body. – Could have stabilized earlier. – You see what I’m saying. So it’s exactly what you’re saying, is just advocating for yourself. Now I’m one those people who
are like I don’t care if I got a cough that sounds different, I’m gonna go to the doctor. “Excuse me my cough sounds
different y’all better tell me what the hell is going
on” you know what I mean? So I just feel like exactly
what you’re saying is people need to advocate for themselves
because we know in our spirit, and our energies
something just aint right. Right, normal, whatever
word you wanna use. Something just isn’t the same. – Right. – We need to go in there and really fight, and advocate for ourselves, and if one doctor isn’t
listening then try another one, and see what happens. Look some stuff up online, and just see what happens after that. – We are coming in to a scary
time right now actually, were they’re starting to
create a policy where doctor shopping will be nipped in the butt. – Really. – Yeah, because again there’s like a drug scare. “People are like doctor shopping
in order to get/abuse drugs.” It’s reaching a point
where you’re gonna get, what’s the word? Exiled, in the medical industry. – They’ve gotta relax. – Y’all just want us to die. – Yeah. (laughter) No seriously. – Y’all want us to die. – Yeah, no seriously. That’s like really what it is. If they can’t get every
single penny out of us, then their just like fuck
it just let them die off in a corner and not even care. – God, real talk. (laughter) – Yeah, that’s how yo know the
people who are creating these policies are not involved
with people with disabilities. Even you know since this whole
thing is about Wheelchair, and wheelchair maintenance. How we use insurance, and all that stuff you know
that by just the process of getting your wheelchair repaired. I talked about this on my channel once, and if something extreme
happens to your chair, lets say a shock broke
or the wheel busted in some kinda way. I mean I go hard in my
chair so I do real damage. But something like that happens their like “oh okay well it’s gonna take
six to eight weeks to fix.” – Nope. – Six to eight weeks? – Nope, nope. – Where am I supposed to
go for six to eight weeks? So you expect like? Cut it out. I get in my chair in
order to open up the oven to cook for myself. I use my chair when
I’m dropping something. I use my chair to leave
the fricken front door. I use my chair just in case I
do lose my balance and fall, because I do live on my own. If I do lose my balance and
fall I need to get to my chair in order to boost myself
up in order to move around. I use my chair even within my home, even tho I am able to walk
around and move around on my own too. Y’all expect six? And I work. Six to eight weeks without my
chair, y’all got me messed up. (laughter) y’all got me messed up. – Right. That’s the thing, how do you just tell somebody
who uses a wheelchair, yeah sorry but it’s bad for
you for six to eight weeks. Like okay well see you later, and then when you’re
following up with them, did you place the order for my part? Did you do this, did you do this? One time she was like oh, it’s been sitting on such
and such’s desk instead. It was two weeks ago when you guys came, now I still have to weight
another six to eight weeks? Y’all got me messed up. So that’s kinda what you’re
saying with the doctor hopping. – Yeah. – You’re nipping it in the butt, but they really don’t realize people. – We have to. – Yeah, we have to. – Because a lot of doctors
aren’t familiar with our condition or they’re too
busy with something to acknowledge what’s going
on with our bodies. – Exactly. Or because they don’t know the answer, they just say you’re fine. – Yeah. – Or it’s something else. Just admit you don’t now the answer, and recommend me to somebody
that you think might know the answer. – Right. – Cut it out. – Yup. – You know what I mean? – That’s why… Full circle back, right now currently
you’re getting a decent amount of support medically. so on the opposite side of the spectrum, so you guys feel some
kind of solidarity with either one of us. – Right. – I have a lot if difficulty
with the medical system in terms of being able
to afford an appointment with a specialist. And at this point, like I said I spent three
years essentially knowing what I had and just begging
doctors to test me for it, and they were mistreating
me and gas lighting me the entire time. So it became psychologically traumatic. – Yeah. – I’m also an abuse survivor, and there was gas lighting
in my abuse trauma. So when doctors did that to me, when doctors tried to make me feel crazy – That was triggering ass well. – This is terrible, so now I have horrible anxiety, Psychological anxiety about
going to the doctor plus having to find the money to go. – Right. So that’s why in my esperance, I just have to try and
figure everything out myself, if I need a lumbar support
I’ve gotta find the money. I’d rather try and find the money, this is personal to me but, I’d rather try and find
the money to make myself as comfortable as I can. and help myself as much as I
can to do the things that I want to do, do the things that I have to do. Using the tools that I can find on my own, verses paying $400 for one
appointment with one doctor. – Right. – That’s just going to
tell me “uh whatever” . – Yeah. – Gimme the money, bye. – Right, right. (laughter) – Oh, it’s just a little
pain girl you’ll be fine. – Yeah, it’s tough. – Right. – We’re good. We are veering off to a different topic. – Sorry. We’ve done that at least five times. (laughter) – It’s blinking, hold on. So obviously we love
talking to each other, we are gonna continue
this on Lo Lo’s channel. – Yes. – Please go check it out, I will leave a link in the description, also up here somewhere. We already discussed here
people can find you? Yes. – Yes. On Instagram it’s @itslololove. -It’s I-T-S-L-O-L-O-L-O-V-E
-I’ll just spell it, I’ll just write it on the screen. -Okay, there we go! So @itslololove And then on YouTube at Sitting Pretty. – Yay. – Yes. – All right so please go
check out Lo Lo’s channel, and our video on her channel
and I will see you eventually. _ Ayy. – Bye. – Peace. (calm music)

17 thoughts on “How We Decided It Was Time For a Wheelchair w/ ALS and EDS #AmbulatoryWheelchairUsersExist

  1. 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

  2. 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.

  3. 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.

  4. 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 deformites on my muscles due to cerebral palsy.

  5. 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?

  6. 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.

  7. 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.

  8. 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.

  9. 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. 🙄

  10. 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!!!

  11. 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.

  12. Both my arms and legs started barely functioning properly anymore. Typing is slow and painful. Have to wait a month for a mri-scan. I'm scared, but I don't feel alone anymore because of you. This video made my cry so much. I'm stuck in my bed, but still holding on. Thank you for this video.

  13. 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.

  14. 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)

  15. 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.

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