Waching daily Dec 28 2018

my butt isn't far too big to be fitting through I know that's not a thing

don't laugh at me good morning I have started my morning and I'm just saying

it's a bit of a struggle because when I brush my teeth I'm a real real

coordinated and so I had to let see I'll try to put you here and I'll show you

what I did or maybe I will just, yeah I will show you because even when I brush my teeth

without this thing on I get toothpaste everywhere and I don't

really feel like smelling like a toothpaste tube so I went like this to

brush my teeth and then all the toothpaste got on here and not on this

situation but now I need deal with this because it's really really

uncomfortable to have my hair down but I've had to redo this bun probably 20

times already today and I've only been awake for like an hour so I will get

some things and then I think I'm gonna lay down and try to braid the back of my

hair hallelujah this hand okay it's not like a hundred percent working yet

or yeah I'm missing yet because it's only been on for like a day and it's

improved so much so I'm gonna try to braid the back of my hair or something

up and then put it in a better ponytail because this is not working for me oh my

god should I do that my forehead gets all ridges like Nolan's and then well

this out man are you ready I think this looks probably really stupid but I'm

wearing like a sports Romo it goes like straight back so that I could I like

pulled it up over my butt that was a struggle because my butt

isn't far too big to be fitting through the but it was that called thick the

band of this bra but it worked it's on and then there's

has polar bears and Christmas lights on it and then of course I'm wearing my

orange pants cuz why not so I will try to figure out what to do

with this hair situation because I'm only going to end up washing it like

once or twice a week and so it's gonna look and I washed it what two days ago

now so has to look like this for another two to three days and I had loosened

this a little bit like when my sleep which was not a good plan so I need to

figure out how to correct myself from twisting this in my sleep so when I woke

up this morning my head felt well I actually felt pretty good when I woke up

I had slept the whole night without gasping for air so what the heck I'm

just gonna talk over them there's a oh

there's been like bomb threats and things to my brother's school so that's

what that is but my mom says that he will be fine

because and like how like credible is this threat if they're if they're doing

it on I don't know I don't want to say too much like inflammatory statements

about that either but my mom says that he will be fine and keep sending him to

school so that's how she feels about the situation and was there saying before

that I don't even remember what my statement was before I started hearing

the school person talk well I will get some stuff and we're gonna try to figure

out this situation I usually wash my hair every single day like I know that's

not a thing washing your hair every day but I seriously do or I did not anymore

so I will try to fast mode me figuring out what to do with this hair I kind of

have a plan but not too good of one

it is a little bit crazy looking but it's up and I for the most part I think

it's mostly secure it up there I

remember what my statement was though that I was going to say before the I got

distracted by the phone call is that last night I think I had de loosened it

a little bit too much in my sleep like I know I pick at things in my sleep and

like obviously this is a cantilever obviously this is a new situation to my

life so I probably picked it I also feel like I'm getting a bruise on my jaw but

that's probably from me talking so much cuts like just kind of digs into my jaw

every time I open my mouth but um so my head felt a little bit like off of its

place this morning like I can still move it quite a bit in here which I mean

obviously you should be able to I think like it's not gonna hold your head

completely like I assume I'm not really sure because I think I'm the only person

that has learned one of these things in our hand in our family so I guess I will

find out when we see one of my I guess I could ask on the internet or something

but I don't know I don't think I'm going to just because I'd like to keep some

movement in my head right now and so I it did like when I moved it around a

little bit it did like click this morning my head did so must have come I

don't know off of its position this during the night last night because I've

for the past I don't know four or five years I've had to like realign my head

to it where it should be like eighty times a day so having it to have it done

it only once and I've been awake for like three or four hours it's fantastic

and my neck is actually I don't I can't really tell

friend so far in the pain in my head but this is like the best ever because it's

not all the way back to 100% function which I don't expect it to be like now

or really anytime really soon but I do it has oh my gosh what is this um it has

improved about like 80 percent so it was at like 30 ow

20 or 30 percent functioning before so now it feels like it's like 85 maybe 90%

like it's definitely weaker than the other hand but I feel like that's due to

not using it very much for the past few weeks so as I use it more and more I

feel like it's going to get a lot better and there's already a fly in this house

how nobody has opened any doors they all left hours ago and there was no flies

and now there is but I will no no I don't even know what I'm gonna do today

because I have PT at 5 something tonight and yesterday man we saw my doctor she

said that we have enough um temperature like abnormal temperature logs too so we

don't have to go in every day anymore yes um that's something else that I was

thinking that might because I don't think I have

well I remembered after I said that I can't remember where I put it I I saw it

last night where I put the thermometer I put it in the pen drawer

I place my thermometer but let's take it now cuz I don't think I have a fever

right now

no it's like normal slash a normal whoa so if this is although it's only I

haven't eaten yet either so I will tell my mother about that and because we were

wondering if that would get fixed pretty quickly too because if I move my head

around more like eating and I don't know doing things then my fever would go up

like exponentially but I don't know where I was going with that statement so

we're still gonna take it every day when at home and then see because she's

supposed to call autonomic disease my doctor today because of the whole they

wouldn't talk about what they had decided on my case or why they had

decided that it wouldn't be helpful for us to come to anybody except for her so

she was gonna call them today or it's late the latest tomorrow morning but I'm

wondering if she even needs to call now if this situation is helping even that

well now I shall eat breakfast / drink breakfast which that's another thing

that was like such a struggle we should have been vlogging last night when I was

trying to eat I was trying to eat pineapple and I don't chew my food very

much I do cut it quite a bit but I couldn't fit it through my mouth like so

I was just like shoving it in and everybody was laughing at me Brewed

don't laugh at me I did not forget about you well I did I

painted a little and then I cut up some pineapple not to eat to put it in the

fridge cuz it's gross when it's warm although I guess our house like a

refrigerator temperature cuz it's like really cold in our house and I will show

you the progress on my painting I should have I guess I could have done like fast

mode painting or whatever but that's beside the point at this point

because I is it bringing know it just looks like it's raining maybe no I think

it is raining I don't know but it looks kind of creepy but oops

because we're faithful us and hairless right now but it I I don't like doing

the faces so that takes the most focus and effort oh tired already and I put on

deodorant which I got a new deodorant it because I wanted to see if the Sun I

liked it better and then immediately my armpits started burnings I don't know if

it's just because I haven't worn deodorant in a really long time or what

sigh but some of my arm it's not making my arm like itchy or anything but I did

like clean it off of my armpits and put on my regular deodorant which we didn't

feel weird at all so who knows what was happening there I know really really bad

idea to try it out something new on my bod while I'm home alone but this

whatever I gotta call this what's that called like rat's nest or whatever I

think that's not my own calls it is staying pretty good I haven't had to

redo it yet except for I do look like I have stuck my finger in an electrical

socket cuz look at all my hairs sticking out all over head well you can't see it

but in person it looks real bad and I need to edit vids I'm behind on editing

and then I I was hoping to no I have to edit anything once we like I don't know

when we go to Texas and everything which I also need to start packing for that so

which is which one I pack for any kind of vacation or anything it's pretty much

the same way I pack as like when we went to Disneyland

I don't Oh like it doesn't like it kind of touches my neck right here so it

irritates me a little bit but when I had it looser I could to move my head like

almost all the way still so I had to tighten it it just feels weird what I

talk when I talk it feels weird because that's the only time that that part of

my neck really presses on that and when I swallow

kind of but hey ed we're switching so eating last night was such a struggle

because I kept like it's so hard to chew at this and then it makes my head hurt

when I chew which is the semi long-standing problem well the pain of

swallowing has been a long-standing problem and we're like well maybe that's

connected to my neck but I don't know if that can't even be connected but it's

struggle to choose then it took me forever in a day to eat last night so

we're switching me to for neo Keats and then whatever else how much our food

that is so that's less like regular food and more and you okay and therefore my

body will be functioning better than it does

we're like originally the plan was to get me eventually

weaned off of neo Kate and on - just like fully eating regular food but

obviously that's not happening because I mean I'm drinking more gnocchi then not

so it's again it is what it is like sure drinking that is not that good for well

it is good for your body and the fact that it's I'm getting the nutrients that

I need but then I don't know why but there's like thoughts that it could be

not as beneficial as I don't know I I think as long as I'm getting in all the

nutrients and everything it's it's fine and

well my body functions better on that anyways because I think I talked about

this before but if I eat fiber like a lot of fiber and it makes my insides

hurt and then it makes me inside bleed and then oh we did get the results of my

pill cam yesterday and it was unremarkable on my inside so there's

nothing that they can see as being wrong with my body on my innards but we all

know they don't function properly so yeah my bod um I kind of look like I'm

like naked when I'm wearing just a tank top I put my jacket back on so I don't

look nude oh my gosh earlier I thought I broke the brace already because I was

trying to put on my jacket and I forgot about the back of it and I like he's

yanked to my jacket and I heard this click sound but I think it was just like

this thing but in the back like going like that so I don't know lutely what

the fam get some cuz I can't see the back of my head or I guess it's the back

of my back I can't whatever well I'm gonna edit some videos and then I have

PG at like 3 up a nope in like 2 hours so I'll see you then when we're there I

feel I feel it I don't know why but like going into public yesterday we went to

the habit for and we didn't get ice cream because the ice cream place is

closed so but um I I feel like people notice I I felt like people would notice

a lot more than they seem to we're at the habit but at Pt I am a hundred

percent sure people are gonna notice because one look at it

although I guess it looks the same in like public places too but it was all so

dark in the habit so um but like they notice everything they're like obviously

my physical therapist is gonna see it and be like what the heck is on your

head and then the aides that I work with like they notice everything but the

other people that are there like they'll notice things that I don't even notice

about myself I should know myself better than anybody

oh we're on the way to PT now and she made me change my pants because she said

that I was wearing too many colors where we should oh wait no yeah we should have

brought Jamie's Christmas gift and drop by there yeah okay cuz I need to get a

gift okay so I guess we're going to target after PT so good luck my leg ease

and we're gonna be late are you going like this because of the thing that

touches on my neck but then also it's like really irritating me like like how

that person said it's like wearing a bra it's not hurting me it's just irritating

me

I hand tell if it's better like really up high cuz I feel like really does hold

my head in place or if I like it lower I don't know I keep adjusting it to see

you like and then well oh gosh no I stop here's the Christmas gift it's a gift

card to Disney because she likes Disney - okay Petey and we don't take you in

because that would be really awkward even more awkward than vlogging on the

bench at the doctor's which our bench is no longer our Big O today I have not had

a fever for one single second well I didn't obviously I didn't take my fever

yeah every second but I did not have it any of the times that I took it and I

had to breathe oh you saw earlier but the back of my hair because my hair is

so short in the back that it kept falling out of the bun and I was just

mad and so it's gonna be like this for the next like three days or until you

decide that my hair needs to be washed so I guess when my ears just smell I am

doing fantastically better remarkably better

so we played balloon game again my favorite not my favorite I'm allergic to

latex it was kind of scary she's afraid of Balu I start getting sweaty but I

didn't cry once do you see me cry you how its turn all oh my gosh hey hi

I made this thing - hi feel like looking at the ceiling

that's not our home I always pulling because I don't like it touching my neck

well we're now going to target because we are going to give Jaime her Christmas

gift and then she needs to buy something well yeah I might go to Starbucks and

just get Starbucks gift cards I need a banner you're welcome for

everybody I'm we're down here because there's people in the car next to us and

yes I'm bending over at the waist so I'd really like you I didn't what

Jamie wasn't there very very sad day yet to come back on Thursday why is it so

steamy in here it will be further I'm chewing gum even though I start to

struggle we're just talking about them so much that I wanted it and then I was

riding in the cart this all these kids will actually go to the bathroom inside

of Target and then like you know what you can tell you've learned staring at

you but they're like trying not to like I was walking into the song and like I

walk backwards I can pull the door closed I could see all the people leave

washing their hands they're not washing their hands at you staring at me like in

the mirror that like nothing can you know height and then by the time I came

out thick like it was gone like everybody was like a ghost town in there

and then this little girl was like staring at him it's like what did my

head fall off jefes wittle girl I know but her mom didn't even tell her it's

not polite to stare she just let her I was like and then I was standing in the

car which I always do when we get trying to get something off the top shelf and

these people gave her this look like yeah why do you mean that's how she

broke her neck in the first place just

like this yeah but then that really told Mike he didn't even have to stand on the

cart yeah I know he has to a really tall guy cuz I couldn't even reach standing

in the cart and then we're like um can you have us so we bought all of the

Apple hedge water that they had their kids water no one does the hint water

should sponsor me I don't know it doesn't even mean but it's not same

thing goodness may God some more you always laughed at me what I don't

know what things on the internet mean because I spend my whole day on the

Internet every single day I don't think we're gonna do anything else so shall we

could just close this out alright bye