her talking about the spaghetti sauce is like me getting to the point when I
start talking hope is hope and having hope for something is better than not
having hope at all it's such a bratty thing to do good morning it is actually
like 10:00 or something but I woke up this morning at like then he was four
gasping for air I was like because I'd fallen asleep and like this and then I
shifted over to over ride back here it was laying on my back so apparently I
didn't prop myself up very well last night so that was a jolly good time this
morning and then I don't know if you can hear them you probably can't but we are
having our solar panels cleaned today and so I woke up about an hour ago to
like stomping on my roof they're probably not actually stomping it just
feels like they are because they're right there and yesterday I overdid it
so much oh my god I'm tired since I've been awake for so long or since I woke
up so early well I did go back to bed kind of and my
legs are hurting they kind of just like I don't know how to describe it cuz it's
not like they're like a burning kind of pain it just kind of feels like they're
constantly moving is that a thing or no but yes I don't know what I'm gonna do
today maybe well I did he - oh quit yawning I do need to write the blog post
that I need to send it up lady and
I'll probably have some life rambling this day maybe I'm dressed wait for
pants but I was taught I was talking to Zeus about this and I wear the same
outfits on repeat have y'all noticed clay wear this shirt a lot which is a
very sad story because it's starting to get all sad and like it's gonna become a
pajama shirt so I wear a shirt like over and over and over again and then once it
becomes all sad and worn out then it becomes a pajama shirt so like I wear
this one a lot and then I wear that blue and white striped dress a lot and then
these shirts they're my um the tank tops yeah I don't know why I do that because
I mean really it's not like I'm out of shirts to wear I just wear the same ones
over and over again and I really don't know why I do that but makes me calm and
comfortable except for the fact that she's totally gonna bad specially if I'm
wearing this sports bra today and like I wear this one inside out just because I
don't like the way the inside feels against me yes and then like luckily I I
don't have like specific days only appears my shorts that I wear on repeat
to these ones looks like then I think they're reversible technically because
there's a sign on the inside too but I never wear them with the blue side out
because I think they look dumb and then those shorts and here's my other dress I
wear this one sometimes I've only worn it twice but I just bought it well
here's the blue tank top and my blue dress I probably was gonna wear that
today but then I decided to wear this like what I know I haven't worn this in
like days
is usually I don't know why I'm even describing this and explaining this
today because I don't think if I would have even said anything people would
have noticed but yeah I'm so tired but I like wearing real person clothes so that
it doesn't feel like I just lay in bed all day like I do okay
today she's getting her haircuts that she's not gonna come home early enough
to make her spaghetti sauce keeps going on and on about wanting to make the
spaghetti sauce so we bought like half the stuff the other day and so I feel
like her talking about the spaghetti sauce is like me getting to the point
when I start talking it's not gonna happen
stir oh it's hard but what is this on my face I think that's oh my gosh
I think I have bags under my eyes are being tired I think that's what this is
oh okay well beside the point I finally finished
so I was invited to like I think I talked about this yesterday about how I
was invited to write a blog post for a blog chronic illness blog and I had a
couple ideas for with what I wanted to write but I literally just kind of
picked out of a hat I was just like close my eyes and clicked and whichever
one I whichever document I opened up that's the one I was gonna work on and
then send today and I finished it I send it already but I did pre read it so
hopefully makes sense because it's kind of just the ramblings of my mind again
so the title is is it bad to hope for this and the blog that it's gonna be a
part of is called chronically need disabled and free.com it's part of that
but anyways here it is I don't know if it'll focus that you could read it or
not but whatever and it's I don't know when it's gonna post it either so but
probably before there's a vlog it started because
I post weeks after I actually film because why edit and upload in timely
fashion my motto not really that's not my motto but
anyways I talked about how like is it bad to hope for some oh my gosh I can't
like Wally but like is it bad to hope for something to be come back positive
or it has to results come back positive or like for me how I was hoping that
that sis did have to be surgically removed from my head which it doesn't so
yeah but I think is it bad for to hope that a test results gonna come back
positive because it doesn't mean that there's gonna be treatment it only
really means that there's a nail and name for what's happening inside my bod
but I had like a lot of times when testing gets sent off I'm like oh I hope
it comes like positive but then I I wasn't blogging at the time that this
happened but about a year more than a year ago now I was sitting in my
geneticists office and we were talking about having me tested for a really
really rare disease that only like 70 people in the world have ever been
diagnosed with and everybody who has been diagnosed that is dead before age
30 so like that was definitely a bad one to be hoping for but at the same time
that would explain like all of my pain my problems my how my digestive system
works so well so even now sometimes I'm like oh maybe that was wrong but like
that's really bad to think about but yeah I just had talked about that and
about how like I I think it's fine because hoping for it to become positive
or to come back positive or that the doctor will be actually able to help
like hope is hope and having hope for something is better than not having hope
at all but like definitely Shh it was better to hope against what I'm hoping
for I hope I'm getting this across Claire because this is a pretty much
exactly how I wrote it and about how hoping are and then the end I wrote
about how hoping against these types of diagnosis is actually probably better
but having the hopes that something will come back positive and everything I
think I understand this from a lot of doctor interactions where the doctor is
like well they don't believe in like the symptoms that you're reporting or
whatever and then further than that they say well there's nothing medically wrong
with you or it's all in your head or that kind of thing or how I I didn't put
this in the blog because we don't need to get into my own personal life gripes
but about how one doctor told me that he's never heard of that so it must not
be happening um it is happening to my body and just because you never heard of
it doesn't mean that it's not it took me a really really long time like I think
it took me like two hours and the thing is only with like 3/4 of a page but
anyways I actually kind of like writing this writing things for a blog rat-like
it's what hopefully they like it and they don't think that I'm like some sort
of nut head because I read some the other ones that are on there and they
have a lot longer of posts and stuff but I tried to read them at least at least
yeah so here's the website and it will eventually me on so I was thinking about
starting my own blog but I don't know how to do that so contributing or
somebody else's blog is great see here's the blog title focus I guess well if I
quit moving it'll probably focus I don't know if it'll focus on kids on a
computer go oh we did it yourself now I do need to have a lot of videos
that I should be editing but I don't really want to edit them right now so
that's that and it's probably lunchtime now just really tired these days like I
could just lay here forever and not do anything
mm-hm and I have I don't know why I'm talking about this now because I'll
probably talk about it again before that happens but on Thursday I have PT at 12
and then I have a pediatrician appointment at 4:30 or 4:15 or something
but anyways people always ask me like why do you go there so often because
she's not managing all my me she's managing all my doctors and everything
pretty much and like what treatments that they give and what treatments that
I should stop and all that kind of thing so that's why we go there so often
because it wasn't going so well with me and my mother managing or trying to
because everybody was it it was like a circus that was just going bad like this
another saying something about like a train crash where nobody can look away
or everybody can't look away or something yeah that's pretty much what
was happening and so that's how I ended up in the hospital a lot for a while
there and then on Friday I go to the ENT and get that camera shoved up my nose
and okay he doesn't shove it up my nose but um local anesthetics don't work on
me so when they put like I think it's lidocaine or novocaine or something up
my nose you spray it in there and I can still feel that thing like it's a it's
it's a like a stick it's really skinny it's like maybe half of pencil width
then they stick up your nose and they like look around the man yeah and I get
another CT done that was another thing that I was gonna
write about but I'll probably write about another day
okay now I've just been a rambling on and on for now ten minutes all I did a
bunch of it out but whatever is left in here sorry still in my room but I did
eat lunch already or drink lunch I'm gonna lay on the floor so it looks like
I'm in a different place I don't think that's really how the world works but
here I am this is actually my favorite way to lay in my room feels good on my
back but anyways like I think it was a week or two ago was when I was just like
every vlog was just me crying it'd be like ah yeah but I'm doing like
fantastic now I think at the time just a lot of things are happening and like I
was saying it was like the race of the turtles like everything was happening
all at once and yet nothing was happening at all so like just taking a
step back from everything and just having everything be like smooth out or
smooth out really just nothing's happening at all right now I feel like I
do better when like either one thing is happening at a time or just like
nothing's happening and I just get to look well sometimes I get really upset
when nothing is happening but right now what I needed was for nothing to be
happening because it felt like I was getting ran over by my own life like my
own life was just going faster and faster and faster and faster and then
there's little me like so now that things have had some time to just be
chilled out I be okay with things starting up again but I just need it to
be like slowly not just everything happening at once and then cuz it just
made me feel like I was going crazy I'm sorry I was noticing that there's like a
ton of hair on the ground in here disgusting
somebody did a vacuum for me I think my dad Maggie before me like last week but
apparently I've had more hair fall out some fun
I know major side sidetracked note but I don't know I've just been like kind of
hanging out in my room like for the past two weeks I pretty much just laid here
all the time and sometimes that's just what you need
like you just need some time to just be by yourself at least for me I do I just
need time just like that nothing is happening I don't need to be anywhere I
don't need to do anything I guess I do have appointments like once or twice a
week still but that's not like how it was where it was for a while there we
were doing like everything all at once in it but I just couldn't take it I
couldn't keep up with I didn't have the energy for it I didn't have the
emotional energy for it I just needed some time and so doing really well male
but like I think that's just kind of been how it's been for like my whole
life is that when things are just going like too fast I feel like I get
overwhelmed by the fact that I feel like I mean ran over by my own life and my
own self and so I just like freaked out because I don't know if I really want to
admit this but I used to have like meltdown flush tantrums like every
morning in high school every single morning my parents would come in to wake
me up and I would just be like like possessed by myself and I was just mad
that I had to wake up and I had to and everybody was telling me what to do and
then yeah I just couldn't take it so I was just be like having a fit all the
time and then once I was able to drive it like it was my it was up to me to be
there on time I started you a little bit better because like it was it was me or
nothing or to get there and so I would just I don't even know how to
explain but I was just needing I don't know because even then well I guess I
did have a lot more time to myself once I started driving myself to school like
I had time by myself in the morning to just kind of chill out and be by myself
in the morning listen music cuz to our high school it's like a 20 or 30 minute
drive every day I think for me it was like 30-minute drive because of traffic
in the morning so I just have 30 minutes like chillin by myself listening to my
music and then in the afternoons school gets out around here at 2:40 but my
class got out at 2:30 because we had a new teacher and our class heads
convinced the teacher that school got out at 2:30 I did I was not part of the
convincing but still and so I would cut I would leave school at 2:30 be home by
like 250 because the other schools aren't out that time either so there's
no traffic and I would just so from then until whenever I had the next thing that
I need to do like PT or gymnastics or I don't know a family dinner what am I
taking ok um I would just be here by myself for the most part like some days
my dad would work from home and stuff but for the most part I would just have
like every afternoon all by myself and for me I think that's like I just need
time where I'm not with people I can't imagine living in a dorm room or
something where there's somebody like right there all the time I had another
thought but I kind of forgot about it when I started rambling on about being
alone all the time and stuff well and then when I I think
it's kind of like a cross between the two pounds about two topics that I was
trying to talk about but lasts or tears ago when I when I was in my senior year
I was on home hospital a lot or I was on like modified day so I would go for an
hour to every day and then I would just come home and
the rest of my school from home and but then on home hospital you're just home
all the time and like I would text my friends and stuff but during that time
that's when I I really realized like I do a lot better when I'm having time
where I'm just by myself where there's like there's no people it's very calm
around me because now although now when I go into social situations I do worse
than when I did back then like before I would just pretend I couldn't hear
everybody and just like but now I like kind of panic social situations like in
before that like in sixth grade stuff I didn't really have I didn't really do
any of these things because I had like we were just in one classroom and it was
very more calm and stuff but starting around seventh grade to 11th grade cuz
that's where I was at school for most of the time although I was I did miss a lot
of school like my last healthy semester school I think I missed like thirty five
days out of like 90 or something like it was something ridiculous but or out of
100 I don't know but it was a lot but I would take earphones to school like
earbuds and I put them in and they were attached to nothing but cuz we're not
supposed to have her phone all the time but I would just leave them in and
teachers really what are you doing and I'm like I can't hear anybody let these
things in so like people would ask me questions I'd be like I can't hear you
over my music life is such a such a bratty thing to do to be like oh sorry I
can't help you but I just didn't like to talk to people
and so like I had some friends that I would talk to and stuff but for the most
part like all the commotion of people I just can't handle it so like yeah most
like 99% of the time I would just have my ear friends in and then for me like I
do I did a lot of my work ahead of time so I would do all of my like history
work especially history because history doesn't change so you could just
kind of go with it and so I would do all of the work for
like the whole semester in the first few weeks and then the rest of number I
would just watch Netflix or whatever on my phone and and kind of just tune
everybody out and be like I can't wait for the day to be over so I don't know
like maybe you for me doing Mike homeschool online school probably would
have been a better option because I probably would have learned more because
I wouldn't have just brushed through everything in a few weeks and then just
like camped out in my little turtle shell but that's how it was for me so
and I would also take like a blanket school stuff that you're not supposed to
do because dress code I guess blankets are a part of your dress so being having
a blanket around with you all the time is out of dress code but whatever I mean
I showed up so might as well be happy that I'm here right well it's so many
like twelve and I'm tired so I might take a nap and then eat dinner once I
wake up because if we're being real I'm really tired so I could just sleep till
tomorrow but I have to eat at some point today so I'll close it out later
when the family's home I don't know why I always do this I think I blog for very
very short or I just ramble on and on and on in the morning for very short
amount of time and then I close out the vlog like six hours later when the
family comes home oh wow oh I don't know what I did to my hand but can you see it
let's see if I can get this focus okay see that okay I can't I can't really see
on here but the skin is like falling off as a pawn my hand I picked off this is
like a blister come on focus on my hand this is a blister that I already popped
that ow that's a blister that's a blister what is happening this
used to happen all the time but it would only happen like when I was
oh my gosh why is it not focusing on my face now you stop it all the time and it
would happen but when I was asleep and then when I was waking up because I rub
my hands together when I'm waking up it would rip off my skin like glove what is
on my thumb nothing okay well I don't know what's happening and it hurts the
bread store has become where's the bread in the back has become the bread
delivery service we are going to grams and the gerron's to drop off some bread
and I already took a bath and she got her hair cut
I can't look at the video yesterday okay
and then probably just going to bed again cuz i'm mirella tired but look at
my hand you can't really tell see that one is the one that ripped off earlier
than I was like and then there's another one that's kind of bad like right there
but yeah there's like 17 of them or something
that I can tell right now that are gonna pop at some point after trying to pick
them in my bath because then they don't hurt as much but yeah pretty much just
end up scratching my hand my eyeballs are two different shapes look this one
goes more up than this I'll head straight
they always tease her that she was adopted so maybe I have one adopted
eyeball and whatnot well anyways goodnight
thanks for watching bye bye bye by
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