thoughts .

so last night I was thinking ,
cuz I always do right before I go to sleep ... just think of random ass shit ....

but anyways
I was thinking how I'm almost off prednisone .
I mean , 2.5mg every other day .
that's practically nothing .
and I'm about to get off it altogether ,
but not till after China .


it's so crazy .
I thought about how
the past almost 3 years that drug
has been such a huge part of my life .
when I was hospitalized I was pumped with a gram of it daily ,
through IV .
a GRAM . that's sooo much .
when I was released I was on 80mg/day .
and all it's fucking shitty ass side effects .
I mean my looks totally changed ,
because it does unflattering shit to your appearance .
fuck .
for the first time ever , this year ,
I've been the most comfortable with myself
I've ever been . ever .
I feel like my body is my own again ,
because for a while it was so changed
from the pred .
and then I would think that soon it would go away
and I would look like my old self .
but I mean , that was almost 3 years ago .
and I look at old pictures of myself ,
and I don't even like how I look ...
which is bad . I should . I should be okay with it .
but honestly I'm so glad I don't look like that anymore .
and I wonder , if I'd been on it indefinitely ,
if I hadn't been tapering it all this time ( well .. except that flare that one time , that set me back so much , it fucking sucked )
I mean , what would I think of myself ?
now I think I have pretty healthy self esteem , honestly I do .
but fuck .
I'm a different person .
I've changed so much ,
and I can't always tell if it's the natural progression/maturity
or if it's caused by my experiences .
and it's both .
but I can't help but wonder
how I would be otherwise
I mean ,
how much of me would be the same ,
and what would be totally different .
I just don't think it would compare .
I got diagnosed right before my 14th birthday , at the end of 8th grade .
and everyone changes from middle school to high school .
but I don't know at all who I would have been .
my life would be so fucking different .
I dunno .
I mean , I can't imagine the last few years without prednisone .
and now , that shit is finally almost out of my life .
not indefinitely though ,
whenever I have flares ( which will come throughout the rest of my life ) ,
I'll have to go back on it .
this isn't the last time I'll take pred in my life , at all .
shit , though .
for the very first time since I got sick ,
which was a really defining , life changing event obviously ,
I'm not going to be on prednisone .
I can't even explain what that feels like .
it's insane .
in a couple months I'll be completely off it ,
for now .
next step is cellcept . but I'm still on a lot of that ,
1500mg a day , 6 pills .
that shit sucks too .
but I mean
I'm one step closer .
I'll never recover from this disease ,
it's going to be with me my whole life ,
it's a part of me now .
but , I can at least start to remember what normal is like again ,
maybe .
not completely .
I still get my blood drawn every two months .
I have to take osteoperosis medication once a week for my low bone density , caused from the side effects of the pills that are keeping me alive .
I mean ,
shit ,
life is crazy .
this is who I am .
and I've realized I've been talking about it more ,
more openly and casually .
it's still painful but whatever , shit happens .
I remember going from 30mg to 25 . that was so exciting ,
every time I had a doctor's appointment ,
and my rheumatologist or nephrologist would turn to me and say ,
well , I think we can cut back on your prednisone again .
and how when I had that small flare a couple winters ago ,
I was down to maybe 10 or 15mg a day ,
and I had to go back up to 30 or so ,
and taper even more slowly back down .
that was so frustrating , being so close and then having endless months ahead of those fucking pills .
wow . this is weird .
my life is really changing .
I'm almost a senior ,
I'm trying to plan for the SAT ,
internships this summer ,
college shit ,
my gap year after I graduate ,
travel plans ,
moving out in like a year .
I don't know ,
I just think
it's kind of amazing .