okay.what whatevs that's kind of permanent well I guess they could go in
and remove it but I dislocated my shoulder getting a lot shorter
good morning we are
taking my laundry from my bedroom to the laundry room because that's where It
belongs and is it even morning anymore
I don't know I'm having a really late start to my day because I just laid
there in my room pretty much all day so far and yeah so I have the Rheumatology
appointment at like 3:30 or something today so that will be happening and
worse we need to make banana bread but I really don't want to do that so there's
that too and I need to get breakfast eaten
Flash's drinking drink drunken drunken drinkin whatever and um my innards hurt
and my back hurts I think I I kind of intend to think that well obviously but
it took me long enough to come to this conclusion but I think my back pain
problem thing that I'm having is just like a flare-up of what happened I am 19
now 7 years ago ish I fell really hard on my butt twice and so I herniated a
disc and all that kind of fun stuff in my back and so like if they can
irritated nerve and all that so maybe that's what's happening with my back
pain because my foot it's more numb than it normally is if that makes sense and
the foot drop in everything I did I never talked about that but that
actually started years ago we just I don't know why we never like addressed
it before my headache started everything I think it's because once my headache
started when I started falling more from it so maybe and why did I even say that
what are we trying to get it oh well um we need to well when Zeus gets home
tonight we need to message my
neurosurgeons nurse line thing and because we got all confess 'old and we
can't remember whether I'm allowed to right there I'm supposed to be doing
physical therapy on my back or not because everybody for some reason keeps
saying cuz I'm thinking about keeping an eye on my spinal cord and something but
I don't really know why they keep saying that I just know that it keeps being
brought up like yesterday my pain specialist appointment he said it and I
was like okay but why but he never really said anything about it but it's
not like I asked why either and um uh shoe well I didn't ask him like just
like a guy what whatevs and I'm sista he wants it also to get a
second opinion before we let anybody like screw anything into the back of my
head because you know that's kind of permanent well I guess they could go in
and remove it but I don't know how that works there anything and um what about
the Rheumatology today I think we're going to talk more about the feature of
either IVIG or a future treatment of something because there is some sort of
um well I don't even know if that if we're gonna talk about that anymore
because I don't I still have in my chart a thing that says like a autoimmune
process but it was happening but I don't even think that we need to address it
anymore or if that's even the case since the fever has ended it's not like the
joint pain has gotten any lower but that's um EDS so no anyways maybe we'll
do fast move bananas bread or we will do painting or something today so that I
get out of my room and stop just sitting in front of my heater and all that so I
need to get started so I'll talk to you later or it'll be
fast mode something
I did some painting but then my back started hurting so that was the end of
that or it didn't start hurting it started hurting a lot more because I
mean it never goes away I don't even know why the pain in my back is like
such a problem right now because I'm pretty sure my back is felt like this
well I don't even know but I feel like I'm having a flare-up of the things that
were happening years ago and so when I see my physical therapist today we will
see about that although he wasn't around for that and neither the two physical
therapists that were around for that time are not there anymore like one of
them I don't even know where he went he just doesn't work there anymore it which
he used to work in different plays than he worked there okay beside totally
beside point and another one she had a baby so she's obviously not there but he
sees her sometimes I don't know why but he wasn't he'll run internet places so
they know about my back and all that like I've been at doing physical therapy
for like seven years now which is crazy to think about because it's just how has
it been seven years and where I am now is actually like 50 jumps back from
where I was back then when I started doing this therapy I was also doing it
in addition to doing like gymnastics and things it was just because actually when
I first started we I wasn't even having all the problems that I have now like I
wasn't painting everywhere but my biggest problem was that I dislocated my
shoulder but I was scared to have it put back in and I didn't really realize that
what was going on and everything like I you know my body so well not that um
I dislocated my shoulder and then had it subluxated dislocated on and off for
about six months before I even told anybody what was happening so now you'll
see when I sit up and things like the first time a doctor ever meets me every
one of them does the scoliosis test whether you bend over and they feel your
spine to see you like it's curved or whatever because every doctor when they
first meet me does that test because my shoulders are so uneven it looks like
I've really severe scoliosis like I can't even just subscribe but it looks
like other than the fact that when shoulders up and the other shoulder is
about two inches lower but okay but it's just what my body is like nowadays so
where where where was I going with this statement I don't remember why I first
started talking about that but I all I know is my back is hurting and it's
probably like one something which I don't know Hey oh no it's only twelve
something so I have three ish more hours before I go to Robitaille I am
luckily the Rheumatology appointment is at a more local hospital that is a local
hospital I guess but it's cut it's like a freeway trip away but it's this doctor
is from the San Francisco hospital which is where we're at yesterday and when I
the pointman is made I was like oh my gosh we're gonna have to make that drive
you have two days in a row or spend the night there but it would be I don't
really know if it'd be if this makes sense but it would be more likely that
we would have made the drive two days in a row rather than spending the night
because of the time that this appointment schedule that versus the
time the one where yesterday was scheduled that that makes sense
but anyways I need to stop talking and like I don't know just let myself or
make myself do things that need to be done
besides laying on the floor and playing on my phone because that's what I do 99%
the time because that's my most comfortable positioning and my hips are
out so I need to fix that too I remember what that other thought was that I was
going to say not the reason why I started that story that just went on and
on but like they thought that I had this morning that I forgot what I was trying
to say that's a very very long way of saying it has come back so yesterday we
went to the bread store which is great and all because when I eat bread I eat
more calories therefore my body will gain weight which has happened but I
gained like two ish pounds in one day by eating like I don't know long long long
story short I haven't eaten bread in like a month
there's so more than that I haven't eaten bread since Thanksgiving and my
body is I don't I didn't realize that I hadn't but I I think that my body is not
processing or I think I found the culprit of my body is lack of processing
food does that make sense because I have when I eat I don't want to get be gross
but
things are not a movement very quickly or very as slow as they normally are
they're moving extra slow through my innards and today of my insides hurt so
much and so I'm going I don't know if I'm going to see I maybe I'll eat it
again today and just see what happens and then do maybe a week without and see
what happens I don't know ask my parents about it like what they think I should
do about this situation because I had said that that was my thought a while
back and that's all I'm going to say about that because it's this is like
definitely not a ploy of mine or something because I don't care like I am
trying to gain weight but it's not like a ploy of mine because that's what
people think as soon as you're like well maybe this is the cause of trying to cut
out things out of my diet no I'm just trying to figure out why my body feels
like it's on fire and being stabbed all the time so I'm going just see if this
is because it's not like I avoid a white flower on a daily basis it's just it I
just don't eat it because I don't regularly eat things that contain it if
that again if that makes any sense so I'm gonna see what happens and
whatever happens happens but I'm kind of thinking that that's the thing because
shall we show my belly it looks like I call it my Winnie the Pooh belly when
it's like really bloated and gross and it's like hard so it's full of something
but I don't think it's you know but make look
oh cord I don't know can you see it usually is like okay but I don't know if
this is more of a healthy look it doesn't feel healthy is that my
innards feel like they're being stretched beyond recognition
but my stomach I don't think I've logged it in a while because that's weird
I think maybe the one where we went to Dress Barn I cuz I was ended up wearing
my bra and like a poncho you can kind of see it so it kind of looks kind of
sunken in most the time but right now it just looks like Winnie the Pooh so
there's that and I will see what we decide to do about this situation later
and I can ask my GI about it next month which today is the 8th so I
see him and like a month in a day which I don't even know what we're gonna talk
about then other than maybe this because uhm yeah I haven't seen him a few months
and we already know the results of the testing that was done and they're
probably really isn't anything more that can be done other than scheduling my
like at this point its annual testing although it gets done like three times a
year so whatever we are here waiting in the world weirdest little building ever
it's it's like a massive building and there's actually one other person here
that we saw there most people cuz usually I feel like I can yell and it's
like echo echo and there'd be nobody here it's like really awkward but I'm
getting shorter you guys like my back crunching down is not just like I'm not
going crazy I was I used to be like 147 - centimeters for them things like
a month and a half ago and then on last Friday I was 145 today I'm 144 getting
shorter galosh my poor back no I don't know if they've been in all different
places so likely just different measurings but how is your height
different places like I get my weight being different because they all have
different brands and types of scales like my pediatricians office just got a
not dinosaur scale like the extent one those ones like it they have in movies
where it's like you tap the hoping over
mm-hmm I came one day and I was like where's it the dinosaur scale I think
somebody's coming in we are headed home because I have visible therapy at night
still and so we are not changing anything right now because we have so
that we know whether it be neck brace or other thing that helped so after I get
my MRIs and well just messenger after the MRIs and then after
the follow-up master again about what happens with this and then we will I
don't know determine what to do from there right
and then if at that time we still think the IVIG would do would be beneficial
then we would talk about what either doing it in San Francisco so driving to
San Francisco however many times a month and because it would be like every two
weeks at the beginning which wouldn't be a problem if we just started that in the
summer because we pretty much do that anyways or doing it at Valley Children's
or possibly ving at this hospital that's not possible that's outpatient center
when we cross the intersection you'll see the hospital and so
in a few months is when we'll be talking about this again
so so there it is and so I will few guys on her way to thistle therapy and we can
we are going home from this little therapy I said I was going to talk all
the way but I did it I'm hilarious but I am not done and now we have errands to
run and I want men cheese so we're gonna go there and um on Thursday 1:00 a.m.
and so he's we're going to email the neurosurgery nurses email thing so that
we can know if because we can't remember whether we're supposed to be if we're
allowed to be working on my back or not I know but I know you're not allowed to
work on the neck on the neck okay it was very clear about that because even when
you do your MRI he's gonna send part of the team to do your MRI yeah but but so
we gave well my feels nervous then then his the nurses number so that he can
call and ask then get clarification himself because you know I'm so great at
passing on information it it always comes my gosh where is my face so blurry
anyways it always comes across so clearly when I do give information
hi it's finally better I don't know what I did but so he's gonna call and ask you
can get clarification books for exactly what we can and cannot do because given
that I'm so great at passing on information do you think she's much
better I had to come from somewhere
very nice I have feeling it's true and so he will see exactly what we can
or cannot do and then so probably on Thursday it's
going to be a completely different situation that we're doing which it's
not gonna make me very happy cuz I like to do the same thing every day so um the
fact that he told me is gonna be different really well really but we are
going to ice cream now and then we will be going home
Lorna we will be going to run our errands errands for the forms and then
homeward more tired it's a - honey we we didn't even spend that long there or had
any of the plates I guess it just says there's three of them after no four
stops forced cuz we got yogurt oh yeah we made four stalks well anyways we're
going to bed I need to drink me Okita again and I need to shower
I can't imagine actually eating as much food as I and what was to be like
supposed to be eating if I didn't drink me okay like my for innards would be
like oh like I don't see how I waited so much before but I think it's because for
like years I never really ate food I just ate ice cream little did we know
that I was just poisoning myself over and over and over again because I was
like constantly nauseous that I would like gag throughout all the time but we
never knew why well we saw mr. reflux disease honestly yeah but I'm pretty
sure it was just because I was talking myself eating an ice cream like three
times a day so anyways good night we're well
I need a clear fret to top over to that tomorrow so we will be doing that
tomorrow and we're sitting out with Jess tomorrow at what time tomorrow I don't
know but we were going to do it today and then she had something come up in
the morning and then obviously my afternoon with all the doctors so see ya
tomorrow and we will see jazz and maybe I'll convince her to be my blog too she
should be she hasn't been in a while bye
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