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Life Update, aka; Life Kinda Sucks Balls Mmkay
12 years ago
Soooo, my life officially sucks. I think I'm allowed to say that now.
For any of you who do not know already, I have been waiting to get
in with a doctor who specializes in my rare condition. However, since
he is one of the few people who treats this not only in the country but
in the entire world, he is a very busy guy. My appointment
isn't until April 22nd and despite everything happening there is just no
way that it can be moved up. However, since this stuff can be dangerous
and debilitating, his nurse made it very clear to us that if we should
get significantly worse or have an "episode" to go to the Memorial
Herman pediatric ER, tell them we're here for dsyautonomia, and to
have them call Dr. Nuemann's clinic for a consult or w/e. Well,
unfortunately we should up at night, and by the time we were back there
was just no way they were going to get a hold of someone in the clinic
(or so I assume, because Id on't believe they even tried, pshaw) and
eventually we were discharged after my BP stabilized (though not my
HR, so HOW THEY EVEN LET ME GO HOME I have no fucking idea) and
told us to call the clinic in the morning and tell them what went down.
So we did.
And the nurse pretty much had the same reaction of "OH HELL NAWW
WTF WERE THEY THINKING" but it's a mute point now. Unless I go back
and get lucky, or there's some miracle, there just isn't gonna be any
gettin' admitted to the hospital. But since my heart rate is so out of
control, the nurse pretty much told me "DO NOT STAND UP OR WALK.
ONLY DO SO IF YOU REALLY HAVE TO." So right now what's happening
is I am condemned to my bed, or a chair, w/e, not supposed to be
getting up, and they are going to try to get me in sooner to see, not
Dr. Nuemann himself, but the nuerologist that he works hand in hand
with. But we don't have a date on that yet, they're working on it. Also,
since we haven't actually been in the clinic with them, they can't
prescribe any treatment. But the nurse 100% wants me to have a wheel
chair, so we're going through my current neurologist and having him
get one for me. SO THAT'LL BE FUN. I'm actually a-okay with wheel
chairs, but it still sucks majorly, y' know? Just a real pain in the ass
(LITERALLY, AHAHA. Ever sat in one for a while? BECAUSE THEY ARE.)
So that's my life right now.
My appointment isn't until April 22nd and I have a once in a lifetime
trip to New York to go to the opening night of a broadway show, and
the after part, to which I am pretty much determined to go IF IT KILLS
ME.
Siiiiiiiiigh.
Anyways. Don't expect much art from me for a while. I cancelled pretty
much all the commissions that I haven't already started (none of them
were paid yet, so it wasn't a big deal, but I still hate doing that) and the
others, well, the people already know it's going to take a while and they
seem a-okay with just waiting. But sitting at my desk is pushing it for me,
and I refuse to work on commissions or serious art in bed. :T
On the bright side, it will be an interesting experience to live in a wheel
chair for a month or two. I mean, I'm hoping it's not that long and some
miracle let's me get in to see SOMEBODY and get treated, or get admitted,
but if not... I do always enjoy getting a different perspective on the world,
and it seems to me that living in a wheelchair would be quite different.
I don't even know how accessible Houston is for them! But I guess we'll find
out, won't we?
SIO OUT!
For any of you who do not know already, I have been waiting to get
in with a doctor who specializes in my rare condition. However, since
he is one of the few people who treats this not only in the country but
in the entire world, he is a very busy guy. My appointment
isn't until April 22nd and despite everything happening there is just no
way that it can be moved up. However, since this stuff can be dangerous
and debilitating, his nurse made it very clear to us that if we should
get significantly worse or have an "episode" to go to the Memorial
Herman pediatric ER, tell them we're here for dsyautonomia, and to
have them call Dr. Nuemann's clinic for a consult or w/e. Well,
unfortunately we should up at night, and by the time we were back there
was just no way they were going to get a hold of someone in the clinic
(or so I assume, because Id on't believe they even tried, pshaw) and
eventually we were discharged after my BP stabilized (though not my
HR, so HOW THEY EVEN LET ME GO HOME I have no fucking idea) and
told us to call the clinic in the morning and tell them what went down.
So we did.
And the nurse pretty much had the same reaction of "OH HELL NAWW
WTF WERE THEY THINKING" but it's a mute point now. Unless I go back
and get lucky, or there's some miracle, there just isn't gonna be any
gettin' admitted to the hospital. But since my heart rate is so out of
control, the nurse pretty much told me "DO NOT STAND UP OR WALK.
ONLY DO SO IF YOU REALLY HAVE TO." So right now what's happening
is I am condemned to my bed, or a chair, w/e, not supposed to be
getting up, and they are going to try to get me in sooner to see, not
Dr. Nuemann himself, but the nuerologist that he works hand in hand
with. But we don't have a date on that yet, they're working on it. Also,
since we haven't actually been in the clinic with them, they can't
prescribe any treatment. But the nurse 100% wants me to have a wheel
chair, so we're going through my current neurologist and having him
get one for me. SO THAT'LL BE FUN. I'm actually a-okay with wheel
chairs, but it still sucks majorly, y' know? Just a real pain in the ass
(LITERALLY, AHAHA. Ever sat in one for a while? BECAUSE THEY ARE.)
So that's my life right now.
My appointment isn't until April 22nd and I have a once in a lifetime
trip to New York to go to the opening night of a broadway show, and
the after part, to which I am pretty much determined to go IF IT KILLS
ME.
Siiiiiiiiigh.
Anyways. Don't expect much art from me for a while. I cancelled pretty
much all the commissions that I haven't already started (none of them
were paid yet, so it wasn't a big deal, but I still hate doing that) and the
others, well, the people already know it's going to take a while and they
seem a-okay with just waiting. But sitting at my desk is pushing it for me,
and I refuse to work on commissions or serious art in bed. :T
On the bright side, it will be an interesting experience to live in a wheel
chair for a month or two. I mean, I'm hoping it's not that long and some
miracle let's me get in to see SOMEBODY and get treated, or get admitted,
but if not... I do always enjoy getting a different perspective on the world,
and it seems to me that living in a wheelchair would be quite different.
I don't even know how accessible Houston is for them! But I guess we'll find
out, won't we?
SIO OUT!
