I was about two months old when these pictures were taken I grew up thinking
that everybody's body hurt everybody's body popped out of place and was popped
back in welcome back to my my EDS series it has been quite a long time since I
last filmed for this series I think it has been almost almost two years since I
filmed for it but about know almost a year since I last filmed for it but
about half a year since I last posted these I don't know why it took so long
for them to be uploaded but welcome back to this series today I am doing a little
vid about the things things that we should have known or sometimes from my
childhood that we should have realized that there was something wrong but we
didn't so and yes I am wearing the same clothes I I just decided I'm cold I
don't want to change so we're just gonna be wearing the same outfit in two vids
in a row well they might not be in a row but still okay so I have some I brought
a my oh my childhood scrapbook this and tat and tab but tabbed some of the
pictures that are like Oh buddy and them because there is too many to choose from
where there are things but you need look at my body you're going but really like
I didn't there's a lot of them where I'm like resting on one arm and the arms
like all wonky or where I'm like running which I have a little list I only put
three things unless because I thought I could film a part two about this it's
not like they're so anything's but there's so many pictures
of me running and my knees are all like oh walking it's just bad so I thought I
would start out with these pictures I was about two months old when these
pictures were taken oh my gosh I should have taken apart the scrapbook so hard
to lift but so do we see oh look there's baby me the white stuff in my mouth
that is called thrush that is because I was highly medicated as a child with
antibiotics like I don't know how much antibiotics I was taking and everything
but my digestive issues started as a baby I had severe um GERD but on top of
that I wouldn't eat as a child is any of the sound familiar I would not eat as a
child because it caused me pain and it's a part of me which is like that it would
have been fully taken care of when I was that age because maybe we wouldn't be
dealing with the problems now but at the same time even if it was dealt with then
would we still be dealing with them now because I think the doctors always told
my parents babies will not starve for themselves
until I met me because eating hurts why do it next oh my parents used to take me
to this place where we would get our photos taken all the time like I don't
know if it was like a photo shoot places something I don't even think it's open
now but can erase this one isn't such a bad one but I just think the pictures
adorable but my me in the picture one of my knees
it get off alright and that one um excuse me kind of way put my knee back
into it's original bending shape place um luckily now my joints or now I don't
stand with my legs so far hyper-extended anymore because we have worked for seven
years to get me to to kind of be aware of things like that and to like protect
my joints with my muscles rather than use my joints juice that was the stand
oh here's another one this one let's see I'm about three two
and a half three in this picture again do we see my knee here it is I don't
know how to get the glare off of the picture but do we see my knee again
thanks God thanks so much for helping us not think there's a ton of pictures like
that like even the line above it okay since I'm on page I'll show you the one
above it - this is so happy that one you can't really tell as much but my knees
the other knee is hyper-extended the other one doesn't hyperextend as much
even though I'm sitting right now I'm sitting in what's known as the W said I
shouldn't sit like that but in order to lift this but this scrapbook I have to
sit like this where I don't have enough balance so as soon as we stop looking at
this we will stop sitting like that on this page itself there's a couple of
other ones but in this little ballerina picture that's like one of the best ones
of my elbows not being hyperextend and then that one where I'm touching my face
and the slimming sent my knee is again not completely straight it is a little
bit further but my elbows look kind of gross like now when I did gymnastics and
stuff it was because when I would tumble my elbows bent more that way like I
would go laying on it and see what I don't know I don't even know how to
explain all these things oh yeah those are some of the pictures from my
childhood that like even before I knew well I didn't know so because I'm not
the most aware person about what's going on around me about what happened to
people around me or anything I grew up thinking that everybody's body heard
everybody's body popped out of place and was popped back in the first time I
dislocated her subluxated my hip hip I'm telling you the entire hip joint was in
first or second grade I those two years kind of blur together for me but it was
one of those two years that was the first time that happened to my hip it
happened my wrists and my hands and everything and my elbows and stuff so
much more often than that like even now it they're just slightly out of place
all the time so I can pop them back in and it doesn't matter it just it is what
it is and so my worth what were they talking
about oh the first time things popped out and everything so I I don't really
know like what to say about that like it maybe if I was more aware if I was more
aware person we would have discovered things younger but also if we would have
discovered things younger this search for help just be longer I
don't really know but it is what it is and my body has had the damage done to
it that it has had because I wasn't aware like I because because of it I did
gymnastics for 15 years only I I did not do it intensively for like 15 years most
of the time I just did reckon it for me gymnastics was just something I did for
fun it was not something I did like I'm gonna go to the book Olympics one day
you know it was just like this is fun and I get to hang out with people that I
like to hang out with so mine's a little keep going and so I did compete for a
little while and everything and I hang on I got a phone call from my dad he was
just calling to make sure that I was awake um what was I even talking about
oh the gymnastics and doing that because of my hypermobility and I've never I
don't think I've talked about this much but my brother and I both gain muscle
really really really fast so even now as weak as I am I don't look weak because
my brother and I gain muscle really fast so I like I have well that's not a very
good example but I have muscles that like would it make sense for me to have
given that I do absolutely nothing that used to be my weak arm now this is my
weak arm and I don't even want to show it's so sad but okay that's enough
rambling on about that because that's not what this video is about okay so
then the next one that I put on there was running as a child I should have
known but I didn't well even not even as a child as a person growing up I should
have known that this was not normal when I run ever since
was really really little like even in kindergarten preschool I remember this
happening when I run it causes excruciating pain in my legs
because it it kind of crushes like the bone my foot kind of like move around
every time I step it's like me yeah exactly that's exactly my feet sound
like not but they were there like really like crumb crumbly when I run and if I
run for a long time meaning like when we would do PE testing and things at school
when it was like the shorter distance running so like a quarter mile or
something it would just hurt my knees and my and my ankles because they would
be start to slide around and my um and then as I got older we had to run
farther and my hips would slide out and I would feel like I could not walk like
I would just be like stiff as a board like shuffling back to the locker room
to get changed to go back to regular classes instead of he and I should have
taken pictures of this but we always thought it was just well it was just a
me thing but I'm thinking it probably has to do with the whole joint situation
but my feet would turn bright red like no joke I have socks over here this like
pretty much this red but they were kind of purply too whenever we would run
because the boot and they would be freezing cold and red when we were
running weirdest thing ever I still don't know what explains that but I
don't and or if I would walk a lot I don't know it just has something to do
with like I think it has to do with being upright like that but I don't run
or I don't run anymore the last time I ran I dislocated my knee and had to wear
a knee brace
so well I have ran inside like our house before and that hurts so bad so I don't
know what to say about that it's just that's what happens to my body when I
run and then the next one that I put on here it just says stroller um
again it has to do with the pain with walking and all that I when we would go
places like Disneyland or any really theme park or places that we had to walk
a lot until my dad got sick while like going went to New York I walked I walked
myself in New York which we we didn't really walk that too much there because
he was sick and so we just we took the subway a lot and taxis and stuff so we
really weren't walking to too much in New York anyways but that's beside the
point but until I was maybe 11 or 12 so like seventh grade I my parents pushed
me in a stroller places because I I could not walk that far like it hurts so
at and I just so since I couldn't look that far I just wouldn't and like it's
just that's what happens for me and so I would go to so we would they would
always have me in a stroller luckily when I was 12 I didn't look like I was
12 I'm sure I have a picture around here
somewhere I have one over there I maybe I'll get it down cuz I don't see one
that's closer well anyways when I was 12 I looked about maybe eight or nine I was
just really little and so like so people don't really give us weird looks added
or anything I just let on me and it like it would hurt so much to walk and so
like when you go to the mall we could go like I don't see how people can go in
the mall still even now when I have my wheelchair they can shop it shopped
you drop because we would shop till I would drop but it would be like maybe a
store maybe a store in half and then I was done
then there was whining and complaining crying and I was 12
like most teenager teenagers preteens love shopping not me
I think that was just it hurts for me to shop too much too much it hurts for me
to shop and like when I have to walk and things so yeah pretty much my parents
just pushed me in a stroller all the time because my legs hurt and the last
thing that I have written down on here but I can think of a few more right now
but maybe I'll talk about them maybe I won't depending on how long I want this
video to be but tubing which tubing is inner tubing like on a lake but I know I
should not have been doing that we didn't know how bad my body was like how
like damaging it would be to my body to do that so I would go in our tubing with
my cousin's every summer we only go to the lake for one week so it was one week
out of the year every year then I would just like trash my body going to me and
everything and again I'm not the most away a person of other people other
things like it's just not me to be very aware and so when we would go tubing
I thought my entire life I thought this was normal until about a year ago and I
realized that can't be normal because none of my other can say anything about
it but I would lose my vision everytime move it to so I get back on the boat and
I'd be kind of disoriented and a little bit confused and stuff but I couldn't
see I felt like all the jostling around of my body I couldn't see again I
thought that was something that everybody had to deal with but
apparently not I asked about that the other day and everybody and he looked at
me like I was an alien so I guess that's not
thing oh one that sharings gonna be like Ellen you should definitely talk about
that is no that really that's not really part of well I guess it is of my my EDS
thing it's um as my bought over the past three I'm nineteen yo yeah says for five
years my body has developed like more allergies or intolerances to things
well there are algae is now but back then they were still like in tolerances
or whatever but I have developed dairy allergy and I was very very very young I
had it and then it went away went away I don't think it really did and then it
would and then it came back and I had pasta at an Italian restaurant when we
were out with Sharon and Taylor in Stanford and apparently I had dairy in
it we so if we had plans you can shopping everything after dinner we go
to Macy's I end up like a puddle on the floor like I have lost control of me and
just laying on the floor in Macy's and everybody's like good up and like I
can't so they pretty much were like dragging me on the floor in Macy's I was
that was four years ago I was 15 or 16 and they're like dragging me on floor
like a toddler in Macy's it was so embarrassing like another major thing
that I it's it's definitely on me that I should have known this but also a little
bubble muffin um I never ate properly as a person should so that doesn't really
make sense so I'll try to explain a little bit but I'm not a great explainer
either we um if I would eat it I was pretty much just allowed to eat it like
because I I was so I've been such a pig and her life that's again beside the
point but there would I I put on a lot of weight between like this great and
like I don't know next few years because I was living on
ice cream and gummy worms I no longer eat gummy worms it again side story but
it's just I was doing so much damage to my body because I have the dairy
problems but I would I was literally just living on ice cream because it was
the most like comfortable thing for me to eat because I don't know like
sometimes and even like throughout my entire life I would go through times
where I just wouldn't eat because of being in pain when I would eat and then
it would just kind of like simmer off and then it and then I was starting
eating again like it was last maybe four or five days longest one before anybody
really noticed it happened it was like fifteen days and when I was in ninth
grade or something is just like fifteen days where I just didn't eat and like
yeah that's terrible but it kind of like once people start to notice it's really
when my like journey started cuz I didn't eat for like twenty days and and
then I was taking the emergency room and then really that's when everything got
started but I feel like I don't know I should have known that that's not a
thing that people just deal with in their lives but I didn't and so that's
definitely on me to have needed to come to the conclusion faster that that's not
a thing that has like happened but I don't know so like these are kind of
more vague symptoms that I've dealt with over my years as a child not and not
knowing I had EDS oh this just like my my EDS symptoms in the child's video I
can make apart too because they're still play
things like I had headaches as a kid I I don't know I I've never slept very well
that's another thing that I've noticed nail is like worse now and it was before
and I don't know if I really think deep about it I could make a part 2 if
anybody wants to see it part 2 of more things that were wrong with me as a
child but we should have known but I didn't or we didn't know but yeah so
well what am I trying to say I have sat here for about 20 seconds just like
Miami labeneh bit it but not even saying like real words so I think I'm going to
end out this vlog since are not vlog this video because it's just getting
kind of rambly and things like that but
but thanks for watching and I'll see you next time which not the next video in
this series isn't gonna be film tomorrow or later today but I'll see ya later in
my vlog or something so bye
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