so i've had a bad week. just plain gross feeling. lots of pain and even though i'm thrilled about this weight gain, because it's hormonal, it's so odd and i just don't feel like myself. i feel uncomfortable all the time. i feel like i'm 4-5 months pregnant. i had to break down and buy cocoa butter last night because i realized how the weight was going on and how quickly. i'm 105 now...up from 88 almost 5 wks ago. so i'm happy. still want to gain more, but i know i will.


i finished the first part of my disability paperwork and had a phone interview about ssi.
today, i had my state disability interview and i should hear back about that in two months, three at the latest, which i was surprised about.
i was also surprised to hear that, for federal, even though i attempted to work this year (what made me sick), it wasn't substantial enough, so they're going back further from my initial application i never finished getting the info in time for (gotta love the memory and procrastination in my life...), which puts the date back a lot further.
but i know i have a while to hear back on that one.


some good news though -- i'm working more on my book and have changed it back to nonfiction with a twist of narrative nonfiction/memoir throughout, but it's still going to be quite different that what's already out there, so i'm excited to get more work done on it and get the interviews going. 
which is part of the news! i emailed someone who is an amazing lupus advocate and she said she'd be thrilled to be a part of my book, so she's going to let me interview her for a particular part, and i can use excerpts from it.
also, i found another phenomenal interviewee with a great platform who can help draw attention.
to add to that, the main lfa chapter in my state is about ten minutes away and i've spoken with the director a few times already, so i'm going to call her tomorrow and see what she can help me with. if she'd be willing to do an interview, or find someone. maybe set up speaking engagements somewhere where i can get the word out about what i'm planning, as well as simply sharing my story and reaching out to others.
i signed up last night to be an e-advocate, so i need to start making a list of government official i want to email to try to get some support.


i have some big plans, i just need to take baby steps so i don't wear myself out.... i tend to do that and then i'm set back way to far. so i have to keep myself in check. especially with how i've been feeling lately.


i spent the whole day in pain, convinced i could make it through. it was mostly the fibro, except for the joint pain in my hands. finally, i broke down and took some medicine, but only half...just so i can go to sleep and could make it through the rest of the night....do what i need to do.
i took a nap for a bit earlier and the soles of my feet hurt just laying in bed. and the backs of my knees....wow!
it reminded me of how i was before i was on meds, but now i have chronic pain management and still feel like this. not exactly fun.


but all in all, i feel i had a decent day. i have the two interviews, plans to ask for two more tomorrow...maybe even three.
i want to contact christine from bydls, but idk if she'll be able to help -- i'm not sure how she's doing lately or what her commitments are..
i might go out on a limb and ask for a celebrity with lupus...or someone in their family, to help -- even a blurb. i know it's a long shot, but if i don't ask, i'll never know!!!
i did my disability interview and dropped off all the information i need to at this point at the ssa.
all in all, it didn't take very long or much energy (although i did end up needing a nap, so that says something....).
but i feel accomplished, so that's pretty awesome.


now i'm off to write some of my book :)
 

new day.

10/25/2010

1 Comment

 
woke up feeling *sort of* all right. i ate a bit and was having fun with my kid. i slept a good amount, i think. 
but then i forgot the cardinal rule. 
--just b/c you feel ok doesn't mean you ARE ok--
so i went around cleaning my house. it all started b/c i needed to find some papers, and it led to me cleaning up the computer desk (we have two computers, a printer, and a netbook on it...an L-shaped desk in the corner -- not exactly an easy task :P).
then i decided to pick up around the rest of the room. and do some dishes. 
we pretty much spend all of our time in the back room -- i guess you could call it the family room. our living room barely even gets walked into anymore, which is sad b/c it's a nice, big room and i used to spend all my time there when i lived here before. 
but the thing is, this back room (technically a third bedroom, but super large -- it was an attached, one-car garage that was turned into a room when the separate garage was built) is the only room that gets cluttered. 
b/c we're Always in it. so it was a lot of work to clean up. and it's not even done.
so now my muscles are not happy and i have a headache and all the energy and momentum i did have just went down the drain. i'm hungry and my eyes hurt and i have articles to write, so i have NO choice but to be on the computer for a minimum of 3 hours -- even though i'd like to do 5.
and i waste the time i have with no distractions doing this stupid other stuff. i can clean any time! why do i do it when the kiddo's in school? i have to leave...oh, right now, actually, to go get her and i'll be distracted the rest of the day. the 3 hrs i wanted will be 5 just because they'll turn into that. but i'll only get 3 hrs worth of work done.
this is why i was saying the other day about getting an office. leasing something just for a bit each day and taking my girl to the boys and girl's club. she has a membership i don't even use...
k, off to get her. i'll finish this when i get back.......


well, what a surprise! i came home from getting the girl and my grandma showed up. i forgot she was coming over to help me wash dishes. yeah, sounds weird. thing is, i'm using random dishes right now b/c the ones i had were still all packed in the garage. so now, once those are in and clean, i can rearrange my cabinets and get everything back to how it used to be.
so it's nice and all to have the help, but i had just taken a painkiller b/c my hips were soooo bad and i really haven't even sat down in 2 hrs.
so obviously i haven't gotten any articles done. no 3 hrs on the internet, which means i have to do it tonight when my guy's home -- and that just sucks. at least he has tomorrow off so he can stay up later and we can hang out. but i wanted my work done before he came home. i've been feeling so horrible lately because of this dang medicine that i know i'm just kind of blah and if i'm not, i'm moody and i just wanted some good quality time
but now my knees just hurt and i feel so unaccomplished.


which makes me actually remember about an office. i sooo wish i could have a space to go to -- just for a few hours a day where i wouldn't have distractions. which is dumb b/c i *do* have an office...the back room doesn't have a bed or anything, but it's still in my house....so it's an issue. people don't understand that this is a job even though i'm home. i need a time where i can't take calls, when my kid is gone (school or b&g club or with family or whatever), and when i can just get stuff done. 
just what i need to get paid. but then that'd be dumb to pay out for an office space and internet and everything else when i have it all at home :P


just wishful thinking. i do a lot of that!!!!


i'm kind of all over the place with my moods. today i'm a bit numb b/c i think the dual effect of the higher dose of my anti-depressant finally kicked in. so i'm not irritable or crappy -- i'm just here. which is good for the time being, and i know it will go away, but it just makes me feel ........   heck, i don't even know how i feel. numb. 
that's the problem.
(speaking of -- have you seen that movie? with matthew perry? i actually Really liked it...)


my arms hurt...my elbows from holding my arms up b/c my desktop keyboard is in the way so my left arm isn't supported since my netbook is off to the side.
my hips don't hurt but will soon. probably in about another hour i'll need more medicine and i was wanting not to take any more. i just wanted to get through a few hours. but if i want to make it through the night, i'll need more, which sucks. i don't like taking more than i already do. i took a picture the other day of my medicine drawer and it was actually comical. and it didn't even count the rubbermaid of supplements!
i *know* my knees kill from walking around and standing for two hours when i should have been sitting. they don't hurt at the moment since i'm finally sitting, but last time i was up...yeah. ow.
vicodin makes me hot normally, but with these hot flashes, it's even worse. i'm sitting here dying right now and the humidity is not helping. i have the door open for air flow and i really shouldn't, but i need it.
and humidity is horrible for lupus. idk why...inflammation or whatever. even if it's cool out, the humidity is just horrible. i want to move back to where i used to live so i don't have to be in this weather anymore, but my family is here and school started and a lot of other reasons we can't move. maybe in a couple years....
at least my headache is gone -- for now. i just want to relax and watch a movie or something, but if i do that, i know i wouldn't enjoy it because i'd feel even worse about not doing anything.


it's just interesting that the one day i thought i actually had a chance not to push myself (except for work stuff), i end up doing more than usual. #storyofmylife


ok, enough rambling.
normally i'm not a complainer, but this is for documentation, so i'm just trying to be honest about how my body and mind feel...so if i sound whiny, well, that's not me. 
it's honestly, truly for the cause.


which reminds me, i had the perfect beginning of my book in my head, but then i had to leave the room and didn't write it down. now i don't have a clue. grrrr.
had that happen with my sequel last night, but at least i got that typed out on my phone..
i hope i can at least remember what it started with.
OMG -- and i'm not one to say that. i actually just remembered!! that never happens...my short-term memory is shit anyway, and this fog i'm in --lupus, fibro, meds -- hasn't been helping.


ok, so i'm off to write the beginning before i forget and it's gone forever!!