I had to change into a nudist gown then liars scandi I don’t wanna go to this
appointment well I mean it’s not like I wanted to go to one this morning either good morning. good morning. oh we are in the mountains different
mountains than when I was filming with my dad when there was all the steam
because these ones aren’t green well kind of but they’re not all Foresti it’s
like what I assume Africa would look like
probably definitely wrong on that buy I’ve never been out of this country so
and this is what I was talking about yesterday my nest in the car even but I
have to C go in the opposite way so that this is kind of holding me up because
over the past few days my body has been really crunching over to the side and we have like two more hours of this
drive to go and then we’ll have to do the whole
drive all over again tonight on the way home
we and then we do it again on Saturday
Sunday son Saturday
for son jizz a graduation party but Monday we go the opposite direction
Disneyland word word hey it’s the last week of their school so no
one has finals instead ball we you know he doesn’t until tomorrow
and then Thursday is like makeups or whatever and then Friday
I’ve been going on school for like two or three hours he’s not even going so
yes it doesn’t matter okay
baseball all the time baseball where’s Nolan baseball that’s pretty much the
go-to answer so we will be getting to the hospital
soon I didn’t take my night night last night because I didn’t want to
and you know it’s probably not a good idea but
sometimes I just don’t feel like swallowing all those two
especially because yesterday I kept having the issue of things going into my
nose and breathing things in so hopefully today is better although I
don’t know why that was happening yesterday because it’s not like I even
had to call her off the day before but then I headed off yesterday so it’s
probably not gonna be better today I guess we’ll find out whenever I decide
to actually start my morning meds even though I’m already an hour behind oh
well the weather here is so weird it’s gonna be almost 100 degrees and yet it
looks like we are sitting in a cloud not a fan of this weather situations teammate oh my gosh look at this you
made bread sticks other day are you here to hold it for breadstick oh my dad came
home when he goes you made loaves of bread I said nope she’s claims she made
breadsticks we’re actually not very much further all
right yeah and we’re two hours away when I last talked oh we have a long way to
go and I don’t know why we’re pretty much stopped add all the fruit stand
even though none of them are open because it’s early in the morning well
you are almost 45 minutes early so we are at the mall not really sure anything
is actually open other than Starbucks but she’s gonna get coffee maybe no oh
good we’re just gonna walk around or get pushed around you’re going the wrong way
if you’re wanting to get to places where there stores okay I guess we’re going to play because
we got to get back and then drive around a bit yeah for the MRI the MRIs first at
least the most terrible part is first look Joyce Tori
yeah if we find that anything that’s opened
I guess I’ll vlog again just kidding we’re going to the MRI right now Oh we’ll probably be back here between all
the appointments so because after the MRI which the MRI liked the whole time
we should be at the building of the MRI it’s like an hour and a half so it’ll be
over around like 11 ish and then the next appointments at 1:00 in Redwood
City but that’s only like maybe 15 minutes tops to get there and then that
one I don’t know how long that should be probably like an hour and then so that’s
like two o’clock and the next one’s that like for 24 30 something like that so we
have a lot of time to just kind of sit around today which I mean I’m glad
there there’s not appointment in between there but if they were squished together
we would be home not at like midnight sure semi in the backpack still um I had
to change into a new discount and the MRI is supposed to be an hour not 35
minutes even though it was the UM without ever a
lady that I like maybe she’ll be that person actually running it not the liars
telling us and then um I’m watching a movie again
I’m gonna watch pitch perfect 2 again because I’m not gonna ruin another movie
for myself because I only have so many that I watch on repeat and this one has
been ejected from the list except for now I’ve watched it like six times
being a memorize just thought I would share the fact that I’m wearing a new
discount scandi what is happening this keeps happening I think it’s the sound
of the MRI in the other room but um what we’re just gonna wait for it to stop do you see what I mean
whale that was not as bad as I was expecting it to be that one was sleeping
in the recovery room because the there’s only one MRI there so there’s 1% I’m
saying she’s asleep in recovery room and this one wasn’t that bad I mean my head
is her egg because it was off and then I popped it back on but like it wasn’t so
far off that I had to have somebody lifted my head as I sat up and both of
my arms feel super jelly so that’s fun too now we’re going to get lush and to Redwood City my going every way
no oh the mall is not like and we are turning the other way you know what I’m
going to tell you so close when you so mark I don’t even know what that’s from
it’s a rubber song of some sort and I always think it now whenever something
unfortunate happens especially to her well
if we ever get to lunch fourth dress being awkward in cpk gusu I’m not one
and then she’s getting salade and bread and we’re just being really awkward
because there’s a lot of people in here off to the other nog all right it’s only
like 20 minutes away baby and we always say that we could find our car or
Sharon’s car anywhere because the sunshades and then after this
appointment we are going to probably come back I dropped the keys on the
floor we’re probably gonna come back to the
mole and then wait around a bit and then we’ll come back to the mall again even
though we could go home right after that the traffic would be terrible
cuz but the point I’ll probably be over at like 5:30 5:40 ish hit that light in
the back my ears that light always on oh you hit the light she turned on the
backlight someone gets Redwood City got turned it on but how long has it been on
Oh I’m not crawling back there to turn I
must have just hit it this place there is a new restaurant it’s cuz the back
doors open though I think it’s like to stop in the middle aisle there okay so
load up that building that’s behind us is a restaurant and there used to be a
different restaurant in there and people are very very very very rude so now
there’s no longer restroom I got that there just I don’t know why I decided
safe but there and then they have these little like Playhouse things cuz you
could it’s by a playhouse or something here I don’t know but they’re like
display play houses and um okay that’s when Taylor had her first surgery a spot
and I I’m free I’m pretty sure we like took a picture or something buy it or
something and now they’re signs I’d say it’s display only my don’t touch corner
girl I know what like I was playing with it or anything
report why are you saving five years ago something like that and now she’s gonna
love and navigate us to the other doctors Redwood City I don’t wanna go to
this appointment well I mean it’s not like I wanted to go to one this morning
either but um so tired but that appointment was
good I guess I mean for naught we don’t have to come back because it seems like
it’s just an eval to make sure like everything’s going swell and yeah he
like gave us a bunch of information and like online resources because where we
live there really isn’t any pain psychologists like he said that there
used to be one and for the area that we live in being as big as it is and as
many people as it is you would think there would be if you can just but there
isn’t so on to the mall again and then to the nerd was really meant and so
seeing what doesn’t really do any shopping because energy crash has
happened I’m tired really tired and now we’re
back in the same parking lot as we were this morning or the MRI and my
appointment is in like 40 minutes so we’re gonna go in soon I’m tired
we’ve been resting in the car my back hurts and one of my ribs keeps
popping in and out of place I think it’s cuz my muscles have been crunching down
on my spine after I laid down this morning
and so my organs and everything are pushing on my ribs not fine and it kind
of hurts although the popping is more startling
than anything but it kind of hurts someone it just sits out of place ma’am
yes we’re going in now I just have to talk quickly because the nurse is coming
soon and we are in the room and I’m still really tired well I mean not that
I was expecting to not be tired by the time we came in here but there was a
little girl in the waiting room quite a collar so she was probably like to you
so well um my whole body is shaking I feel like like there’s a super
earthquake inside of me like San Francisco what is that 1989 or 1991 or
something whatever year that was that’s it feel like inside of me it’s like a
whole body is shaking and pretty sure I weighed more today well not that I did
at that my last doctor’s appointment at last pediatrician appointment because
that one I don’t know why I wait so much but it was great but now the weight that
was out there was lower than that so again more fast talking because now it’s
even closer than calling it by I have been getting the more sensitive to
things which I will talk about in the car because I don’t have time for that
now but I started breaking out in a rash because some lady was wearing perfume at
least that’s what I say because I didn’t put anything in my mouth out there and I
don’t know if you can tell oh well this that’s that’s not the rash
it’s you can’t see it on camera can’t see you not really
but basically this is just a really exaggerated version because I scratched
it um I basically have welts like this but lighter pink raining all over not on
my face Utley oh yeah on my face a little bit
and I can see a mobile even in camera didn’t start coming up around my fingers
and I was like no no but why is this happening
things like this is – not your date my life
hello vlog I am still loopy yeah super loopy from um benadryl and I
was just fixing my situation that is happening because benadryl gives me a
dry mouth or a dry mouth and talking gives me a dry mouth because my mouth
has never closed long enough for my saliva glands to do anything and I have
lazy saliva glands not that that is at all a medical term but my saliva glands
do not so I retain colony salivate over time oh
gosh oh but I haven’t even talked about the appointment yet so the appointment 3
the appointment was great well depending on how you look at things because thank
you obviously you never want surgery so
great we’re not having surgery because there’s not damage to my spinal cord
yeah yet we that’s what we are waiting for I’m fine in the meantime my arms are
fuck are not our losing function the whole being a situation where things are
not always and Ryan they should be just about that my headache has gotten worse
again I’m going to start losing more function of beside my faith and letting
it swell and whatever else oh so like in that regard it’s not such a good thing
that we’re not even certified because um you see there’s only three months out of
the year that I could have surgeries because my parents oh yeah I can take
off quite yeah you could take off work of it then how are you going to pay the
medical bills that is the only issue that’s the only drawback exactly so-oh
that was good so the MRI from this morning looked good and ah amirite it looks exactly the same as
March work so it wasn’t that long though but they said nothing about the MRI that
I did in April so I’m pretty sure the wrong thing was ordered yes because I
had the exact same memorize Taylor had and we have completely different
sections of our head needs imaging because my head needs to be imaged from
about like here to here and her head needs to be image from about like here
to here I don’t know if we can go diagonally like that but we had the
exact same MRI sequence done should I get your wheelchair while you’re talking
yeah and we while we’re eating dinner and Nordstrom’s
well she’s eating dinner and I’m drinking me okay and then I will eat
snacks probably on the way home or I don’t know because I don’t really want
to eat its Alex I don’t want right insights to bleed I I don’t know I don’t
I don’t know what I should say about that um but back to the appointment
Ellen get back on track guys I’m so loopy and I don’t know if it’s because
and Bendel’s let’s make you tired but since my body didn’t feel like the
normal like tired queues or whatever I either just like fall asleep or I’m
lying um did I go from just like this awake you to sleeping and like um and so
like I’m loopy because like lack of sleep can cause loopiness I need to get
you or yeah well can you get two of them and the cup the silver cup and a water
bottle please and so like black asleep and cause sleepiness so I’m like maybe
that’s it but I don’t think so because you should see me on IV benadryl they
talk about a party getting started oh my gosh there’s people around isn’t there
really like what is she talking about and yeah so I don’t like I would I mean
I did I didn’t go into this appointment hoping for anything like I was i well
yeah we were hoping they could help with the situation but like we kind of did
because well the reason why I I’m like I don’t really care that we’re not like
permanent fixing the situation work I guess what you guys I get to lady out on
in sleep we well I shouldn’t say I just get to light a little sleep it’s like
yep amigo me it was never a them telling me not to lay down and sleep it was when
I would lady on my head would disconnect because of the pillow and just because
of laying down they told us well we were doing wedge so I don’t know how long
this laying down a sleeping thing is going to be a thing because we were
already doing that during um we were or we were already oh we were already I was
already on a wedge but I’m going to get lay down and sleep because they gave us
ideas on how do you make that a possibility and won’t a more definitely staring not
because of me not because I ride in the wheelchair like this quite easy
not really I Drive I was riding with my feet on top of the like leg rest of
things and I’ll just talk later when I’m not less poufy and not in public
guys there was a dictated gazelle there but I’m gonna talk to the class okay so
I am right I’m actually more happy about the fact that I went to lie down and
sleep because that’s been my number one thing that I’ve been telling everybody
like if I had one wish that would be it this one’s flat so no one wishes that
would be that’s right like I don’t even care that we’re not getting permanent
fix I’m laying down to sleep okay that was all I needed to say but I was trying
not to be awkward in the store and now we’re going to the restaurant so see you
later hello it’s Wednesday I think oh gosh instead of all in my
teeth odds are but and I’m still wearing the same clothes as I was yesterday
because I slept in until 2:30 today it’s now 9:30 and I kind of fell asleep when
this is bed for a while this after or this evening I don’t know
why I’m so tired I I finally woke up at 2:30 and then
just been tired ever since because yesterday was such a
long day and I’ve thought some more about all
that had all that was happening yesterday so the MRI was fine like
there’s no lasting freak out about the MRI because it went well
and I still hate MRIs but I didn’t I didn’t think that was gonna change you
know the lady was set on making me like them
I still don’t and then the pain psyche thing whatever like
again that one went fine I don’t need to see a psychic at least unless we think I
need to because there is no pains like where I live so we’d have to drive it
elsewhere and I don’t know we’re just not gonna do that right now
and there’s enough like things happening and moving pieces to our craziness so
you know we’re not gonna do that right now and I don’t know like I there’s good
and bad that came out of the appointment like the good part is I don’t need
surgery right now because I mean who wants surgery you
know what I mean but the same time like surgery would
have been nice because at least then we would be doing something to address the
symptoms that are happening because right now we don’t know what’s causing
them and oh my gosh I don’t know like we don’t know what cause or why they’re
getting worse and everything and like the only thing that really they had to
suggest was going back to physical therapy which we know how I feel about
that because it makes me like have so many crashes and my body is tired and I
don’t think going back to this with every right now is gonna be all that
much of a good thing because then we’re just causing more and more and more
information to my brain and my body and really if this all the new numbness and
weird symptoms everything are just like what was happening in the blast fall
then going back to physical therapy is not going to help the situation we’re
just going to be documenting a whole bunch of regression and I don’t know if
I’m going to be mentally okay when that happened
because why don’t I tell ya I’m not like feeling it right now I just I’m more
scared really than anything right now because oh my gosh I don’t want to cry
I’ve pretty much ever since I woke up I’ve been crying today because I’m
scared and there isn’t really anything that we could do that to make me less
scared about what’s happening because we don’t know
and my doctors don’t know what tappity yeah it’s all just kind of scary we
don’t know what’s causing this have done so we can’t treat them like with a
solution we are just sitting around waiting we’re really right here we’re
waiting for at least from what I understand from what was said yesterday
because we’re waiting for their to mediate our spinal cord before we do
anything about all this happening so right now we just need to find a way to
make the symptoms better or progressed less quickly because what we we aren’t
doing anything about them which makes me so scared because I spread my arms by
like my right arm which is arm that I’m holding you guys with right now it’s
losing function pretty quickly like yesterday I would say that it was at
like 60 years % or 65% is what I think I was in yesterday and it’s down to like
60 now today they the hand is really hard to like grab things with and um
like there’s no fight but our skills of that hand pretty much at all anymore
there will be no brushing my teeth with that hand I thought trying to stab up
with your own eating with that I hate like coldest food kind of still
opening packages is a no probably opening my toothpaste is gonna be hard
soon I’m preparing myself for these things to happen but the part that makes
me so scared is that the website is being attracted so this is at like I
said like 80% yesterday probably about the same today but it’s slowly starting
to go to they dot so much working and then like walking
it hasn’t good okay so things have been going not so well wait my walkie is were
getting worse worst worst and yesterday at the appointment there were two things
that surprised me one uh she had me raise my arms up above my head and I’d the right arm is plenty flexible enough
to get up to by my head but it’s not strong enough anymore it has lost their
strength in my shoulder to pull my arm all the way up so it goes about 4/5 the
way up there and then it’s just stops and then the other thing that surprised
me wasn’t walking by walking I know it it’s been getting worse and then I was
tired at the appointment yesterday so I didn’t think that it was gonna be all
that great but it was a lot worse that even I thought it was but it’s not like
I do a lot of walking around our house anyways but yesterday they were both
like super super floppy and I thought oh that’s weird but like oh it’ll probably
be a little bit better right tomorrow again because
I’m just really tired well it’s not better it’s about the same if not
getting worse because they might both my feet when I picked them up yesterday
we’re flopping and so I walk like a chicken today I have started to have
where when I step on my left leg I think well when it looks like and I’m going to
the right one if I’m not careful what it feels like my D about gives out so
there’s like now I don’t know what to do about that either because it’s just
happening and so I’m just more scared than anything about all this because what happens when I do lose the function
of both arms because it doesn’t look like we’re out of work
gonna be able to stop all this anytime soon so yeah it we’re headed we’re more
likely added towards me losing complete function of both arms and ability to
walk then we’re going to be able to stop it because if it is the same process of
what was happening in the fall I already see how this is going to go and I think
that’s the part that scares me is that I’ve sort of been through this before
but it’s worse this time and like the default I didn’t cry about it all that
much because I didn’t know what was gonna happen
I actually thought last fall that everything was gonna be fine and we were
gonna find out what was wrong and it was gonna be an easy fix and things were
gonna get a lot better but they’re not and yeah so just scared right now it’s everything is going to be okay because
it kind of has to be but I don’t know where that time is going to come and how
much our function slash ability to participated life that I’m still going
to have at that time but it’ll be okay and I’ll I’ll be I will look back at me
like you didn’t have to be this afraid of everything and this is probably going
to have seems like a very traumatic up at the top like emotion to feel like I
spent in the moment this right I’m just scared
and I hope we do we’re able to figure out a way to make this and boobs better
but I don’t know it’s probably they’re going to dressed
be whatever so I better try to prop you up so I could show you my arms okay so
like do we see this one does it go all the way up anymore and I didn’t know
with the hat until we were at the point but yesterday you had me do it and I was
like oh my gosh good it a lot to see it pretty sure by that nurse that uh she’s
the same one for my original plate I think she was shocked at how bad things
have gone so quickly too and that we are still waiting around because things are
progressing quite quickly and I’m actually really afraid of stairs
I do too because I keep having this like feeling of or like thoughts of whatever
a dreams actually whatever sleep / nightmares of the falling out a flight
of stairs because my legs just give out good
I’d scared for what that happens because I don’t actually know Abbott’s at the
end of the dream because I never get to that point at the dream but it doesn’t
look like a very nice thing to have happen to just like see yourself fall
down a bunch of stairs yeah Milwaukee I don’t know if you’re gonna be able to
tell how awkward things look we’ll see because this is a really small biggest I don’t know can you can you even tell
because it’s only like two or three steps to my dress started back that by
like toes aren’t picking up so I pick you up baby is more and kind of kicking
my feet out to prevent myself from tripping on them which I almost ate it
yesterday in the neurosurgery office oops I was walking and they called me
back and I was walking and they right in the doorway between the waiting room I
think the back of the office area I caught my toe with the carpet but I
caught myself before I fell and then when my nurse is with us and we were
going through all like the reflexes and everything and they’re doing strength
testing she had me doing a little bit of walking it was holding on to me because
she thought I was about to fall off my head and I never told her the story
about one that actually happened I had to get an MRI and a CT because I fell so
hard in a hospital that they got a messed up my head so one more quick
walking good example of me because I’m taking these videos now of me walking so
that in a few weeks or something or as things change some more we will still
have footage or still have a thing to look back on of what by walking actually
it looked like weird right now if I put on my AF o on my right foot it will hold
up my right foot so then I can wholly focus on my left foot and the left foot
Bella I can focus on it and it will pick up my toes
but on the right foot really I can make it go up like if I’m just sitting here
but I can’t get it to do up repeatedly when I walk so what more example then
I’ll say it also the whole walking the jewish-owned
isn’t all that there is it isn’t easy to walk because I feel like my whole world
just tipping over and shaking and then my whole body shakes which were is
twitchy and shaky right now which again I don’t really know what to do about
that or really like yesterday she thought I was shaky because I was all
because I was nervous or whatever so we but I the shaking and everything is not
getting any better and yeah that’s all really I can say about that it’s just uh my body just shakes that’s all that I
can say it it’s gotten a lot worse so I fully look like I am shaking all the
time now versus before you could kind of tell only if I was like really really
still or only if I was trying to be really still so if I was like like well
the couch or something you could see my legs shake but now you could actually
just kind of see it which I don’t really think you guys can tell because I’m
holding you and so you kind of shake with me but it’s also like very very
late at night right now because oh not dolly it’s a late night for tea but
anyways I need to go back to sleep because I’m tired and I my mind is going
too fast so I’m going to go to bed and hopefully tomorrow when I wake up my
walking is better and I can update that I’m walking without having to walk like
a chicken so good night then we’ll see you tomorrow and we are gonna go to
Daniel’s graduation this weekend so road trip why


  1. I definitely don’t think you are being dramatic at all. I have eds and I also have those days when I just break down and cry. It’s very scary when your having to fight with your body every day to do simple things like walking and making your arms work right.

  2. LOL….the playhouse story! Thank you for your update on yourself. We hate to see you sad, but it's totally understandable that you feel the way you do. Have hope Ellen. You never know what will happen. We are sending good healing thoughts your way! HUGS!!!!!

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