what does better really meet I mean if anything goes wrong then they just call
it ambulance so it's not getting better
good morning so it's Wednesday I think whatever today I have PT and then we're
also getting our propane filled up so you could probably hear that in the
background but I'd lock up the dogs and the pool and I hope I was leaving I was
like nope sorry and maybe both were like oh we're in the pool and so I gotta
leave in like ten minutes but generally awkward cuz the propane guy came like an
hour early now on the land only get your floor still have like five more minutes
before I actually need to leave okay I had a thought
not oh I am gonna drive to PT I'm probably not supposed to be driving
still but it's only like five minute drive right I mean like out people in
the mean time but I feel like I'm aware enough to drive there I haven't been
like majorly confused only really still with questions interactions
it's like muscle I'm ready to get there although anyway muscles don't really
work but still and then when I come back then we'll continue on our well chat
from yesterday I feel like all of my vlogs I'm just laying down talking to
y'all different positions but mostly just on my bed like hey I've been trying
to lay more flat more times because when I lay flat it feels like I can't really
catch my breath but yeah I was laying flat right just a
few minutes like her when I first I'm at this clip although I had just started
laying down it usually takes about a minute and then
I'm just like it just feels like there's something like really heavy sitting on
my chest so there's a lot here ology about that next Friday this party I
don't know at some point I do and my rheumatologist got backed or emailed me
about the IVIG plan and so for the first six weeks I will have it every two weeks
and so I start at like that 10% and then the next time I go in I do 50% then the
next time it's 100% and then after that it will be every month assuming that
everything goes fine this first time
the worry part is that if everything doesn't go fine like since its pumping
into my vein I could be dead not to be dramatic or anything but that's the
truth so the first time I'm doing it in the
hospital and then after that like the fourth week in six weeks or whatever
I'll be doing it at the infusion center I mean if anything goes wrong then they
just call it ambulance so yeah one time I went and my what my dad was getting
his infusion and I saw a person going in ambulance and I was like oh my god that
could be me that's not what I was thinking at the time but now I think
that at the time I was like what is happening what time is it okay well now
I actually need to leave her to PT so bye okay but I'm gonna turn on some
lights so that we can actually see yeah okay oh well like so like jello I don't
brother tired but like I was saying yesterday
what does better really meet because like if you were to have the flu a
better would be when you no longer have the flu but like for me does better mean
well obviously it would be better if I was not having symptoms but if we're
being real that's probably not going to happen ever so like what does that mean
better functioning lis function uh less pain
like oh I don't know feeling better now that is better but like all of these
things we can't just make one of them improve without or all of them would
have to improve for one of them to improve does that make you sense so it's
just like what I don't know what I'm trying to say it's like what can we
really do to change this stuff and so that's where I fall under the category
of a symptom management and I've been like doing a lot of journaling and stuff
well typing because I can't really write but typing and I'm so tired of doing
symptom management because since so many treatments have failed really for me
symptom management is we're not gonna do anything and we're just gonna hope that
Unicorn farts and rainbows make it better it's not getting better like it's
just not so when I see my neurologist oh and getting emotional oh so I see the
new neurologist on a Friday not this Friday so moving next Friday I don't
really know but whenever I see the new neurologist I try not to let myself get
hopeful if they'll actually be able to help or they'll have some ideas because
there usually isn't anything they can do and they're just like well we'll just
watch and see what happens but like for them
it's just another month or three months or even six months of just like waiting
around and seeing what's gonna happen but when I go home I still have all the
symptoms and I'm still struggling with daily life things so it's that really
like helping anything no I don't know I just I met in this place right now where
I'm just tired of going to doctors but I know I'm like if there's ever going to
be a change I need to so oh I'm gonna try to well now that I have all those
papers in those binders and jumping topics really fast here but either today
or tomorrow probably more likely today I'm gonna try to film some of those
videos the ones where I just like sit down and talk and wait just you know
yeah I lost I write film them in the kitchen maybe I'll set up in here but
really like what does in the world of like I don't know and the world of
chronic illness what does better really mean because people are always like so
you're better and they yes no like at this very minute
I'm not curled up feeling like I'm about to die okay that's being dramatic but
still like I'm not girl'd of just like laying there like a mummy but am I
really feeling better compared to then yes in the grand scheme
of things no I've been like trying to decide what does it mean to feel better
these days because I've come to accept I'm not going to just magically get
better and be back to my pre illness cell with being diagnosed with something
that was genetic like I think back and the first time I remember like popping
having something pop out of place and I have to put it back I was six I was in
first grade and it was at the playground I'm like at school and I'm like I
thought that was a typical thing but obviously no and then as years were
going like oh I was always in me so then we started around the time I was like
eight so two years later I would started like I felt constantly like if there was
a world record for taking advil I probably have it fine it oh oh no
hopefully this IVIG will eventually help just yeah trying to its I get upset with
myself for becoming hopeful before an appointment but but then at the same
time like it's good to have hope for each appointment but it's becoming
harder and harder to like build up the hope and like carry on to the next
appointment and stuff so luckily I only have like one scheduled appointment but
then I know I have three in the next or three that I three IVIG is in the next
six weeks and then I have the one scheduled appointment and then I have
another one in November so right and then I'll have two or three in December
but it's just hard to keep like keep the hope up because I try to stay
positive about everything but being positive and being hopeful are not the
same I think you can look at everything from the bright side
but that doesn't like I don't know being hopeful is like actually inside of you
being positive if you just like pretend so now it's all back to the blog so I've
been I filmed I think - ish sitting down videos here's my setup it's a blanket my
chair you guys and then this is all like a coat rack but that's how I fell Nathan
I used the lighting from a window any window I just set this up in front of a
window but now there's gonna be like a major gap of time in this log because
the batter's blinking because I film so much today well I didn't actually film
so much I keep knocking it off between filming but yeah and so doctor my
rheumatologist emailed back and she wants me to see a neurologist about the
numbness and tingling and all that and then she also wants me to get a bunch
more blood work done to check on my vitamin levels and stuff and so she
wants me to get in contact with my primary care physician my pediatrician
basically and so I'll update later once the battery's charged and once all this
has gone down or we make our decisions for tonight so see you later bye it's
been a few hours I took a shower i dinner and got another is it's a email
not really an email message from my rheumatologist and she Neal wants me to
go see a neurologist or mr. hand and have some blood work done with my
pediatrician
I owe but it's a headache specialist
neurologist I don't even know this some of them could be some of them can just
be paying doctors maybe Oh No but I think we're gonna have to see
another neurologist some things that I think about should be a video all of
their own otherwise these videos of these vlogs that end up being like I
don't know whole hour cuz I filmed some earlier today and I think those those
videos that I was trying to film in front of the sheet that I took down
already but those videos are gonna be like 15
minutes maybe I don't even know there was two of them and then the second one
kind of got cut short because it was running out of battery and then I filmed
the short clip for this before but shall we go find Zeus and their doggies and
then what was he doing in the meantime oh I made a spaghetti squash well I was
waiting for the battery to charge and before I eat dinner and all that because
melted there he is look nothing it's you
he could care less that's like when we put the camera on him he could care less
come on
nothing to think I spend on thanks for watching
but then say bye-bye
does he fight okay well see
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