EMERGENCY | CFS CLINIC
21
November

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , /


but last night was quite um the
adventure and so I fell asleep and then thank goodness oh I think I hit that I
like that he’s looking at all angles of this morning it’s Saturday and so we are
going home today the last night was quite the adventure
the predicament how long is night ever
so guess it was around like a 8 or something I started saying that like
finally My cough is dried up and it it was it felt like it was all just kind of
stuck in my chest yeah but it was at least I wasn’t like hacking of along
anymore which I guess that wasn’t a good thing but I got a break from it for a
little bit because my lack of ABS super hurts from coughing so much but then I
also kind of feel like my insides are having a problem too so it’s just a big
verdict I meant in there and so we just thought that my cough was
kind of getting dry and weird and then around like 12 o’clock wasn’t that one
yeah around 12 o’clock I started I I thought that I was just not coughing
like not producing that like it was it was it was I was freezing and then
instead of like coughing my body with all the muscles like and the air would
come out and it sounded like a somewhat of like a sneeze and the world’s weakest
cough and that went on for about an hour and a
half and she was just listening to me and like we’re so then she gave me the
rescue inhaler for my asthma which the asthma hasn’t been a problem a big
problem for us for probably like ten years so we thought that that was behind
us apparently all right and then that didn’t work that did nothing so then we
did something else laying on my stomach rather than on my back because I already
have breathing problems when I’m which I was a leg down anyways but leaning
forward rather than kind of leaning back and then we tried doing a steam to try
to open up my Airways with the warm of the water and that didn’t work either
it was just really really hot in there everybody was sweating and I was still
breathing like but quietly and then when we went out of there we forgot to take
off the plastic bag that we covered the vent with so then the fire alarm went
off in our hotel Ridge luckily this feeling was kind of lowish so he just
poked the button and it stopped going off and then it was to the emergency
room for SHM Eleanor and her lack of breathing lungs so then get to the ER
and it’s a very very very very tiny Hospital and see you have it waiting out and waiting
room adduced goes to the desk thing and this one guys like runs the whole
emergency department by himself at least before you’re in the back part and then
there was only like two or three people back there running that whole situation
but he brought us back there and then had the doctor comes before they even
did the blood and all those things that they normally do before he had me go
back and then they did a they did some blood work moat it was mostly fine as
the things that were off weren’t that big of a deal
and they weren’t off by too much and then the
sunita a steroid injection into my IV which they had flip today and had
thought that they wanted to do a chest CT which luckily they didn’t end up
doing because we would still be at the hospital right now waiting and the and then I did a nebulizer for one hour
I think it actually took like an hour and a half because I could see a clock
and and by the end of that I was breathing like and then I’ve cleared out
a lot of the goop out of my main airway because but first when I was breathing
you could just hear all that boob like or at least I could I don’t know if they
could but then when I would cough it was sounded terrible we are now headed to a pharmacy to pick
up my prescription of steroid so that hopefully this asthma attack thing will
have P I don’t know over with under control
because we do not did not expect my asthma to cause a problem because I
haven’t had a problem in a really really really long time and it’s only well it’s
infection induced asthma so obviously there’s some sort of something happening
and then the as though is like oh you think that you’re fixing one problem
with your body well here I come and then being annoying and dumb just like the
rest of my body driving back to the airport but we’re driving through the
middle of the woods probably not actually in all the woods it’s just
trees but it’s beautiful look you can’t see but I can that that house that is
currently behind all the trees it has one of those wood water mill
thingamabobs so that it can make something out of water power and there’s
a guy running down there by the freshing see there’s can you see the wheel thing
now not real there’s the Pentagon although it just
looks like a flattish building to us because we can’t see all five sides but
oh my god off on the wrong exit so then we saw the Pentagon whoa and the street
here makes me kind of dizzy because it feel like we’re going around and around wait duping buddy look he’s actually
stopped so I’ll thank you this way we’ve got
Universal a microphone we’re sitting in the first plenty of space
tiny and anything better than that you’ll likely and my father said we hurt and I can’t
breathe again Happy’s son oh my gosh my voice what is
happening to it happy Sunday vlog look it’s Zeus and her
slave aka Taylor and they’re correcting a lot
of work it’s usin didn’t crack what we were going and there’s more and then
there’s mortar classroom this morning my nephew Lancer is now kicking in I did
that like probably an hour ago and it’s finally working a bit so I can breathe
and get enough air down to cough because this morning when I woke up I was just
laying there like and then I was just laying there more like and then
yesterday the vlog just cut out early because or I’m like midway through that
second to last flight because I just couldn’t end anymore my body was just
like and so I fell asleep and then thank goodness it just I my
whole body is just so uncomfortable today still and I coughed out something
card and white so that’s in a ziploc on the counter
Chuck what’s up well like this isn’t going out for two weeks so it doesn’t
really yeah I know it looks kind of stringy in here but it’s not it’s hard
white goop from inside of my body and I got I also have a nap continuing to
cough up the green gray Christmas and worth we think that all this is just an
asthma problem but oh no I haven’t had asthma attack in 10 plus years so
my gosh when I breathe it in it just feels like I’m working really hard
they’re talking kind of hard I don’t think I’ll be talking to you guys for a
little bit for a few days what is happening Taylor just got out of doggy
Jail all three doggies are inside Sadie and
Milton had like jumped up on the counter that’s like turning on a camera in the
first place but because Noland in his all his friends or whoever’s are in the
front yard because he came home from baseball today meow and then the boys are probably
gonna come in and eat pizza so they’re they’re trying to eat the pizza before
other boys come in and take all the pizza at melton be nice oh oh gosh I
can’t breathe okay we’re going we we’re at Jesus classroom you can’t see her but
Taylor’s right there is shy and she’s back there no oh it says where I turned
on me but I don’t you baby it’s not like there’s any cars out right now I always really bad reflexes or really jerky
motions and I tried to reach for the volume controller and I’m disappearing
oh you’re not I’m cute but I I can’t tell how hard I hit things so I thought
that I just tapped it apparently not um that’s what oh my gosh that’s a poke maybe it’s um Delaney as bad I deserve
the wait guys lol we’re trying to go to Graham’s house programmed by Zeus’s hair
no no no she’s not dying yet she’s enhancing the beauty hair I can’t talk
bye good morning I thought that I forgot you
at home well I did but he remembered to grab you yay dad it were well we already
had my appointment at the chronic fatigue clinic at Stanford again and um I need to message him in two weeks
about my new medication I’m thinking it’s and below five but a really really
really really low dose like you have to get pulled right up in an insulin
syringe low dose so less than one milligram and right now we’re headed to
go find lunch
and it was really not much has changed since the last time I came here don’t
run over the people who look like they work here phone down and anything else I
can’t remember no I think we’ve ran into a dead end
um but uh it’s a very confusing boat look at the drive-thru at this point
with my neck and having the chronic fatigue because nobody’s really sure
what’s coming from what and so he’s hoping that them fella by will help with
some of the symptoms that are blamed on my neck at this point but also that
might not happen so um yes that’s it right
yeah he seems very hopeful let the sound go if I was gonna do wonders
yeah but wonder there were but he not necessarily him but so I had the doctors
were very hopeful about the naltrexone to which I mean it’s it’s in me I don’t
I wouldn’t say it’s like a miracle worker or anything but it’s definitely
done less harm than other things I’ve got in so far so in two weeks I need to
message about that and then we’re not increasing then now trucks own like what
would normally be done or at this point because if depending on whenever the
surgery happens having a lot of doubt Rexona in your system is not really a
good thing for that because it blocks the yeah yeah that however that works inside
of your brain or inside of your nerves or whatever it doesn’t work well which
I’m pretty sure isn’t no tracks on what is used for an opioid overdose anyways
so it’ll counteract the effectiveness and yes like I don’t really want to just
set you up for taking a bunch of opioids and have nothing happen and just being a
ton of pain dirt after the surgery so I like that he’s looking at all angles of
this because I kind of feel like a certain one of my other doctors who
wanted me on naltrexone at one point would it be like well this is what I
want and if you end up in a ton of pain after surgery well I’m not taking care
of you after surgery so this is what’s happening not like I had a doctor say
that or anything oh look how fluffy that’s a dog of some kind hello it’s
Tuesday and I pretty much just like ditched out on you guys yesterday and
then Taylor came over this morning and was hanging out and then she took a nap
and Dale I’m back to typing and doing homework and tired my breathing is
okayish today like i already did a nebulizer once this afternoon / morning
ish noonish and then I’ve been doing reading and typing I yesterday I just
hadn’t ditched out because I’ve just been confused and had lately and a lot
of things are just happening in my head and we I don’t know where I’m going with
this but I guess from the appointment from last week I haven’t really
processed to any of that and like yesterday it hit me like I’m actually
gonna have surgery and I might actually feel better after that I mean my dad
always tells me you’re raised or your results may vary so we don’t know how
much better I will feel but hopefully I will start feeling
better after that and what is on my face oh great a scab because I’ve been
picking up my face so that’s lovely I think we know what day surgery is going
to be because it was avail it was one of the days they said that was available
and it works out on all of our sketches because we have to schedule around
Zeus’s chemo and then Nolan has some more College things that need to happen
before like the beginning of the year too but we only have I think like seven
more weeks in this year we’re probably more than that but I don’t really know I
mean we’re in November already whoa we’re in November I could wear my
Christmas sweaters what am i doing I’m wearing mermaid pants and a mermaid
shirt and I could be wearing Christmas letters it just hit me that it’s also
November so and then yesterday he seems really really excited that but I’m
hopeful that my the new med that I’m starting today probably I don’t know it
seemed s was messed up about how about the the dose of it because I am taking
such a tiny amount like normal as ten to thirty milligrams and I’m taking 0.25
milligrams a quarter milligram of it he seemed the doctor seemed really really
excited and like hopeful about that yesterday but when people start getting
excited about my bod and things I start to look at them like are you okay in the
head are you gonna be okay over there because I’ve had other doctors get
excited and then they give up like a year or two later about three years ago
my pain doctor called my mom or promised around that I’d be better in two and a
half years mmm or she’s sure about that and then
headache doctor promised they’d fix me I my allergist used to get really really
excited about my bod and all the things back when we first even started my
allergy stuff which was surprisingly around like ten years old and I don’t
know how we made it that many years without me like dying because I am
allergic to peanuts even in the air and all those years I was eating lunch in
the cafeteria at school don’t know how that happened but good job my boy so he
was really excited about that and I don’t really know how I feel about that
I mean I have to contact him in two weeks to tell him how are two weeks from
starting it how that’s going and all those things and to see if we should
change the dose or what I don’t really think anything is gonna change but we’ll
see and then we were usually they would change the Med that I am already on that
dose of it but that can interact with medications for surgery and things so he
just doesn’t wanna deal with outright or mess with that right now I think he was
he was we were talking about my neck and everything and I think he’s under the
impression that I haven’t been diagnosed with the or haven’t been diagnosed slash
that instability hasn’t been seen on imaging because he’s telling me about
how he’s had other patients start this Med and they didn’t even have to
investigate their neck problems and he’s like maybe you won’t even need to check
race and I was like and I’m like no it were surgeries happening before the end
of the year which then he was very confused and wanted us to get a second
opinion then I explained that no both doctors have said that surgery is
necessary is just a matter of when and I don’t know if this is like not a thing
well I knew I feel like it should definitely not be a thing but he his jaw
if he was a cartoon character would have hit the floor when I said and that our
local neurosurgeon like not local to where I live but local in comparison to
the one in Maryland said that there definitely is crania cervical
instability but we’re not doing anything about it until there’s permanent damage
to your spinal cord and his drop out hit the floor and he was like whoa so I
guess that’s not a thing but whatever it doesn’t matter now because we’re I’m
seeing a different neurosurgeon about and everything but then I’ve been so
stressed out about the whole surgery situation because I there’s a couple
about I think two or three different topics of why I’m stressed out about it
the first two are kind of the same but I can when I have conversations with
people and the reason why I have a lot of struggles in my life like trying to
actually speak because I remember entire conversations and not every conversation
I remember but the ones that I do I remember the entire thing and well in in
a day like if I had a conversation somebody I’d probably be thinking about
it all day long so today that we got my or we had
dinners with your appointment and everything I just thought about that all
day and it’s still I’m just still thinking about it like I have a very
very large chunks of conversation just like in my head and then I like
perseverate over one part of it forever and a day and my the part that I’ve been
really like stuck on right now is we’re talking about how like after surgery
it’s very very important to keep my head straight and not let it be all bobbly
all over the place because that could cause problems later down and he said I
don’t want to see you back here in a year having problems at lower down and
I’m like what if that happens oh my gosh I don’t want that to happen either but
like whatever happening I I know I’ve known it’s a possibility for that to
happen because my dad has been talking to him with his friends
sisters I think whose child also has ETS or something I don’t really know the
full story but she had the Skjold c2 Fusion done like I think your two ago
and now I was having trouble at five six Senna’s like everything’s falling apart
again and but it makes me stressed out because
he said like that it he doesn’t want that to happen and like neither do i but
then what if it does happen to moms like we’ll just cross that bridge when we get
there and like if it happens it happens and it’s all like I tried to make it
happen but it just life happens and things happen but they’re also being
kind stressed out about it because my neck muscles are actually quite tight
from being in the neck brace just from not moving into that it’s full range of
motion but if their muscles are actually pretty
strong in can yeah like all things considered they’re actually strong like
that’s why I breakin like 10 callers at this point but I’m stressed out about
them stretching out again after coming off and then I’m like well what if it
was in stable unstable T before and then now the muscles are all tied it’s kind
of holding it together but then whatever they stressed out like that’s how it my
entire brain is just like discombobulated and I feel like I’m
spinning in my head and then the other part was just like the fact that there’s
gonna be screws in my head and then I’ve been stressed out though mostly about
the screws in the back of my head that possibly the I don’t want to see you
back here in a year situation and then I’ve been stressing because what if this
doesn’t help my lower body which I’m not really expecting it to because the
collar didn’t help my lower body at all but I feel like there’s an expectation
for it too and then if it doesn’t like is the whole world is disappointed
because they I don’t know if it’s a thing that isn’t something that I should
probably work on this but I don’t really like I get scared and I have like major
fears and weird things like those kind of emotions about my body and mostly
just fear though things but like the I never really disappointed about things
of my bond unless I’m feeding off disappointment of somebody else about
that situation which is totally messed up in the head and everything but I
don’t know why I don’t I think this is something that I need to work on and
it’s like I I need to work on acknowledging those emotions and then
deal and expressing them in a way that’s not just kind of just like a little in
the head because that’s kind of where I am right now but I guess I should get
back to typing and you’re running out of battery and I think Sadie is here
because Taylor brought her over and then she sending her home but then Hans home
so I don’t know unless Sadie’s just hanging out here for a while I guess
yeah you guys can tell that my breathing is doing a lot better especially after I
nebulized but it gets kind of tight and since I’ve started antibiotic I haven’t
been coughing up as much green-gray goop so I guess that’s good because but
except for the reason why I stay I guess and not that’s good but because it
hasn’t changed the fact that a lot of times I get really really tight and when
I breathe you can hear it all whistling and gross like you can kind of hear it
now but obviously I’m getting enough air because I’m talking like a million miles
a minute but also that’s just because my brain feels like it’s spinning out of
control


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