I am 99% sure I did not pee myself my weight needs to be restored I don't know
how much more I can do
hello vlog it's Wednesday today I think and I am kind of feeling
back to myself it's been about two weeks since I came home and I finally feel
more like I feel more alert and not so like a zombie like like yesterday I
would just sleep and sleep and sleep until I would to get woken up for meds
and everything well no I predicted me that I'm having today well it's just
been over the past like five minutes I've been sitting here doing stuff on my
computer for however long I've been awake or since I've been upright and I
noticed my butt is completely wet I don't know what happened I am 99% sure I
did not pee myself but I don't remember spilling anything and like the carpet is
just wet here and it's like quite a large spot so I'm
like I don't even know what happened or if like maybe water was dropped when my
morning meds were given possibly like I rub the carpet out I don't know what it
even smells like like it smells kind of vinegary or like my carpets molding now
just probably what's happening um but I finished editing last week's vlog and I
noticed that and I realized I never made it clear what I was talking about so um
upon being a discharge from the hospital my MRIs which were scheduled for next
weekend or this weekend were cancelled even though we only did the head and
spine and all we still need to do flexion extension and something else
just to you know see how my head is attached to my body and see how well it
is attached to my body they were cancelled and we're like okay
well like when are we going to do them and when they were so they've been
scheduled they're scheduled for six months out
because my body this past hospitalization was so rough
on it and my body's so sensitive to change so I I don't know if anybody else
feels like a total zombie for the entire week once they've come home but that's
how I feel and so what very much wouldn't the most important thing is
that I didn't meet my weight needs to be restored to like
before our hospitalization wait before we can go ahead and move forward and it
probably should be up a little bit more because if we need to do something
surgical my body is going that's like more stress than just all the testing so
my weight needs to go back to a healthy weight it's like I don't look that bad
right now but my weight is pretty low and then
yesterday I did my heartrate I while I was wearing my watch yesterday for the
first time in a while and it has a heart rate and my heart is unstable so if we
talked like I need to really get things together for my body to be stable
because if we went to my doctor today or tomorrow which we're not and they did my
heart rate we would have to go sew or we'd have to go back to the hospital and
I don't want that to happen so um we're gonna continue on resting at
home and then tonight we or sometime this week we're planning on meeting my
cousin's baby she was born um about a month ago now we like the first day that
we went to the emergency room we were we actually had plans to go meet her that
night so I'm going to deal with this wet carpet situation change into different
clothing because my butt is flippy soaked although I'm pretty sure did not
pee myself I think I said this before in another vlog like the one before we went
to the hospital or something that today just something feels worse I don't know
what feels worse on my body right now it's just I feel gross like I was
sitting up and yeah I feel more back to be
me but at the same time I feel like there's something happening or something
inside of me that is not pleasant like but today my stomach hurts I'm just been
nauseous and my head hurts but like that's normal so but then like why do I
feel worse know what I mean hi guys so we've discovered I did not
pee my pants last night the water heater is broken and the water
heater is like right on the other side of my closet I guess and so it was
basically spilling water into my closet so we now have my carpet drying and then
Sol Natha what's that called the water heater guy The Fixer man he came and you
guys ordering parts and then that will be fixed but luckily we have other water
heaters for the other parts of the house so we can still take showers and you
guys last night it was so like rough emotionally I'm just oh I'm tired so I
didn't want to uh but I'm just I don't know how much like fight I have left in
me because
really we don't know what we're battling like yeah there's the ETS but I don't
know if that's what's causing all these other problems obviously that's probably
what's causing the net and probably the aneurysm - but I'm just tired
Oh so when yeah like I'm I don't know how I put this or it doesn't say I'm
like I'm just like you know how it feels but yeah I'm tired cuz uh it's
exhausting dealing with the pain and everything all the time I just want it
to end the pain and everything all the doctor's appointments all the tests MRIs
CT I don't really care about getting my blood drawn but that happened so often
emergency rooms regular doctor visits it's just a lot and I'm tired
oh so I'm just letting myself feel the tiredness and then a half do
creet will to keep going from subway well anyways I've I've been eating
chocolate and cookies today it's Valentine's Day and I've been eating
chocolate and cookies all alone and I'm pretty sure I'm all alone right now yes
I realized that during the last clip I was trying not to cry during the clip
and everything but that was like a few hours ago too
um because I feel like that's all I do on the Internet is I talk about things
and then I cry and then there'll be a few videos of me just need doing fast
know things and then another crying video and it just goes in a giant cycle
but I don't think I was really clear on what I was trying to say earlier oh my
gosh uh I don't think I'm gonna get through
this about crying about it but okay so the whole like fight thing I don't know
how much more I can do like oh my gosh I'm tired my body is so tired and during
the last hospitalization we talked about like what I meant by that with some of
my doctors and like my body is just tired
it's like quitting basically my body wants to quit because it's been so long
and it's been a lot longer than we've really been we're gonna you call it like
pursuing answers and which has been like I've been vlogging
for about a year and we were looking for answers for maybe three years dish
before that or and then well more than that more like I think we've started out
I was about 12 but even before that like I was living the struggle life alone
before that because I didn't even know that what I was experiencing and feeling
in my body wasn't normal but now what do I mean by it I don't
know how much more fight I have left in me is because it feels well it's just
even it's not even that just feel this way it is this way um every little like
improvement that we are able to make I get giant leaps backwards a problem
regression or I guess symptom progression and like using the
terminology like you gotta keep fighting fighting what like what am I even
fighting the pain by fighting like what because yeah don't you like put up a
fight against the pain and everything but in the end wait what is that end
goal of just keeping going through it all the stuff
good news is I have gained out a half pound since I weighed myself last til
when I weighed myself today so we are headed in the right direction but I
don't even think I said this yesterday but from the stress of my body of all of
what's been going on I let my defecting my heart again because my bodyweight
dropped and so my heart rates really really like MIDI key right now last
night I think 3 o'clock in the morning they have my watch set to send me
notifications if my heart rates up too high for a too long and at 3 o'clock in
the morning I got awoken by my watch going off because my heart it was at 130
and I like I don't know what was going on last night I'm not even sure if I've
slept because I was dreaming but I was awake but I don't know if my dream was
of what was happening like I don't know what was happening it was like but I
wasn't in my dreams yet like really happy or like go through emotions and
dreams like going through a movie basically is how I dreams but I didn't
feel any of that during my like sleeping it was like I
was just peaceful last night and but I just wasn't really like sleeping but I
got more rest from whatever I was doing last night then what else but actually
think but I just want us to be able to get to an
improvement without setbacks which I which isn't logical to expect that
because or to get improvement to it out like other random things going back and
like yesterday and today I've been saying that there's something wrong and
I can't tell what it is I think it's that I'm losing more of the
sensation in my legs then because I arm my arms have been fixed by the collar
my legs are there's been no change or just a little bit of progression which I
don't like obviously that's not like we're gonna have to figure out what's
going on there but we're just trying to get me back to a stable place before we
do the next set of scans and then talking about the future of surgery or
treatment options and I'm just exhausted but like my body just feel like it's
like giving out that's what I mean but it's just tired well hopefully oh and
tomorrow my physical therapist starts coming over to our house so uh I guess
we'll see how that goes and I won't vlog during that obviously cuz she just comes
for I think an hour and we probably tomorrow just gonna like see where I'm
at physically probably not good where I'm at right now
physically because I haven't really gotten off my bed in days because of the
paint's just so much last night we didn't go to Target and to get frozen
yogurt B existed and then today I just pretty much been in here the whole day
so just gotta keep push it on I just I think it's just I didn't I need time to
like process what's happened recently and then to be able to like move on to
or to be able to press forward with what everything else that needs to happen and
then I don't know I've just been copping a rough time like what the painted
everything but I try to pretend that I'm okay but it's just so hard I'll see you
guys tomorrow and hopefully I feel like better or at least just out of this
feeling of like this fight is never empty but just thought that's what
cronicbeats but I don't know I'll see you later bye B are checking the weather
weather report from Ellen you're so cold because I spilt me okay doll over my
jacket well just whoa it's hailing a lot of it it's like rain and marbles out
there oh there's um people driving by and then I opened the blinds abruptly
and then they were then looking at me and my fazool therapist came by and we
pretty much just did all the questions today and here's my things to do until I
see her on Monday so yeah I'm really distracted by the hail so I'll maybe
film later so you got a package from a viewer no no on the Instagram
I bought a message like three months no maybe did you send me like okay get out
not really mr. Timothy
I'm sure this'll tell me oh good oh well
here look what a nice hard
oh wow
plus she can't open it you're supposed to breathe it in and helps you relax but
you don't breathe air like that you put it in a diffuser
no these are the breathing in types I
haven't talked to you guys in a long time which is very sad but we got ready
for it ready for it the diffuser going wait I should press it a second time
because otherwise it's gonna like gas me out like it did earlier it was just too
strong I thought on high for me probably
because it's like do you see it and then my bed so I was we're trying to put it
over by my TV but our motto plugs over there so I need to figure assess the
situation and figure out what is even plugged in over there sorry if my
lighting looks really funky because my fan which is on still I don't know why
that's one but so update and then I think um after today I'm going to end
this vlog maybe and then try blogging again more regularly and not just like a
one clip a day type thing but it's um well so my
rubber hosing that my legs or I was saying that something felt weird but I
didn't know what felt weird and then yesterday I think I came to the
realization that the thing that felt weird that I didn't know what what it
was but something was off it was my legs they were hurting flesh
like tingly it was just weird well we were supposed to run out of one of my
medications today I think and so we who had been tapering down on it because I
have three that are new from the last hospitalization and the we can't figure
out who prescribed this because all all of my applications ended up being
prescribed by just whoever because my doctor was gone and then like an on-call
doctor in the middle the night I ordered one of them then one of them was is one
of the nurse practitioners and then we don't even know who the third one was
and so we are been having a major hard time finding are getting this refilled
or at least the prescription transferred over to our pharmacy
I don't know the disconnection between how or between the you know what I mean
like I don't see how they expect us to be successful at outpatient when we
can't get our things together and not really like general practitioners PT
Tricia and all those types there's like things that they are like they prescribe
regularly and then there's things that they just really just never prescribed
and my mom ended up calling her last night was like please just to prescribe
it just for this like month and then hopefully we will have everything to
figure it out by the end of it otherwise we will talk to my neurologist about
this which I'm getting a new neurologist anyways but we have an appointment with
the new neurologist
sometime at the beginning of next month and I don't know how I even feel about
that it's not another headache center it's at the Stanford one in the Hoover
Building but I mean headache doctors really haven't been able to help me very
much but maybe they stopped her will hopefully maybe I don't know but I need
I I'm supposed to be getting dressed right now because we have Zeus's
birthday Taylor's birthday and grandpa's birthday all celebrating them today and
um yeah I am still in my pajamas because Zeus's birthday we just kind of like
skipped over it sorry Zeus like our family went out to
dinner and I think that's analog and then but like with Gramps and gran and
Sharon and everybody we'd never celebrated um and then the hospital
happened and I was in the hospital on Taylor's birthday so that like their
family probably went out to dinner and we never like she's pretty much my
sibling so we kind of like celebrate birthdays and everything all you know
and then grandpa's birthday was on
Valentine's Day or the day after Valentine's Day I don't really know
okay well I'll get dressed and I will take you guys with me to dinner and I
think I'm going to dinner otherwise I'm just staying here and then an eating
dinner here because I can't eat dinner at the dinner place
and then when no one comes home to take a shower he will pick me up and we will
go to the eating cake part which I also I'm not gonna eat cake but you know what
I mean buddy go to Ellen he was here he comes
base it no he knows it's a good job buddy
is that to demean oh do you take a picture right in the hole Ian wait
there we got it bogged it up I just left the blimp in there randomly quiet
I watched the 36 minute one from yesterday yeah without it her nose oh
yeah I wasn't that I might have made the camera a little bit foggy up there you
go let's look at mine Napoleon now let's let's have like a light with a montage
now let's go to the cake cuttings on this side wow this is some amazing
quality
hi pops we are headed home and Nolan's driving and our parents are back we were
next to them and then Nolan told them to taste our midst because it's still
raining I think I I don't know if I ever said that but it's been raining for like
weeks or at least it feels my way
say goodnight
I love see you tomorrow maybe more Monday fight
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