wow... i just wrote a whole long thing and somehow deleted it and i'm not really all that happy about it. lol
i decided to move this journal over to the site for my nonfiction project.. i felt it deserved its own space, away from my fiction and editing.
i'll be adding a lot of news over there, as well as this journal (for those inclined to read it), great links, as well as how to advocate. i want to band together as many people as possible and, through them, help show why lupus needs more funding and research. new drugs are great -- i'm thrilled they're voting on a new drug -- but it's not a cure :(
anyway, head over to my other blog if you want to find out more about what i'm doing with my book and lobbying and volunteering and all that jazz.....

seriously. i have no money to pay my phone bill til tomorrow b/c i've been dealing with this annoying company for like seven months using a phone i hate. well, needless to say, with my clumsiness, i dropped one of the phones that we ended up replacing and the screen shattered. so now we owe $100 for the deductible for that on top of the phone bill. so my phone is turned off til tomorrow! what is that?! i'm sorry but that just makes me feel....idk....not good. i don't want to be that person, but what am i supposed to do when i can't work v.much?! so my guy has to pay the money and then on friday, when i get some sort of paycheck, then i'll pay him back. 
but the problem is that today i was actually super motivated. i was going to make a ton of phone calls and now all i can do is email. bleh.


but i'm getting further along with my book and i'm super excited about it. i wrote a bit about it on my writing blog.


i also had something totally crazy happen last night and my guy CANNOT believe how i reacted to it. or rather, my lack of reaction to it. my fog has been beyond horrible and i'm just in a stupor.
i'm overfed and hormonal and just totally out of it.
i mean, who forgets two things for their child in less than one hour? (did i write about that the other day?) and then what i did, which i can't write just, well, just because....it was so stupid and ditzy and i still don't even really care. and it's kind of a big deal. like really. but whatever. i have other things to worry about, you know. i'm in bed right now, about to leave to take the kid to school. 


yeah, so i'm back. actually cleaned up the garage a little bit and ate something. something real. and i got out the chicken Now so that it's thawed by the time i get ready to make the chop suey or whateveritis i'm making. i already forgot and i just looked at it lol


now i'm chatting with a friend about the craziness that is our lives (she's going through disability stuff, as well, but for different reasons -- yet another invisible illness, though, which is just no fun) and i'm trying to finish this blog, and i'm re-working the query my author friend was awesome enough to rip apart, as well as re-working a certain part of my concept because it just needs to be done (again...info on my writing blog). man, how freaking bad is it that i don't even remember if i've mentioned it here or not?
i've had fog a lot, but it's just RIDICULOUS lately. seriously..
part of me feels like there's not much point in writing b/c i don't even know what i'm saying :P


ok, so i DIDN'T write on here what i'm doing with the book.
i had a conversation with the man last night and he just didn't understand the fogginess/fuzziness and my general 


um...idk what i was saying. b/c i was writing this yesterday and just stopped haha


i'm thinking it was that he doesn't understand my general zombie-like attitude. cause that's pretty much how i am. granted, i'm up on anti-depressants b/c of my HRT, but if i didn't have that higher dose, wow... i'm still sort of on edge.


anyway, i'm ending this now because i have a PLAN for this blog!! a good one. you shall see :))
all my zero readers haha....

soon!!! =D


btw...it was sweet and sour chicken i made haha. and it was good!

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 :)

so after i spent too much time on my feet, i did the same the v.next day. my guy was off -- his only day off this week, so i ran tons of errands and didn't even get to start working on anything until almost 8pm. 
then yesterday, i dropped my girl off at school and went to the grocery and then went and got a pumpkin. our new desk chairs arrived (thank God!! they're amazing!), so i put those together.
i got a decent amount of work done, but then realized my first disability appointment is monday....not the 18th, like i'd thought.
not a clue why i would have mixed up dates that are nothing alike, but it's the name of the game, right?!


one thing that's really good is i have a writer friend..well, acquaintance, who is willing to help me with my book proposal. i've been putting most of my effort into that lately and i'm just so excited for it! the passion i feel for it....
i felt that passion (and still do) for my novel, but this is something that's more than just entertainment. 
my only problem is platform.
i'm trying to get articles prepared..at least queries, but as of yet, i don't have non-fiction about lupus published. plenty of non-fiction, but only like two or three about lupus and fibromyalgia.
which i had actually forgotten about those, so yay me for writing this and remembering. i can put that in my proposal as part of the platform!! nice to know those are out there! i got paid for them, so it's safe to say i'm a published author about lupus when it comes down to it....no matter how little i've written =D
that makes me happy.
especially after the wake-up call i got. have to go in to see the dr about my test results tomorrow. last time that happened, it wasn't good news. except this time, it's for something totally different. i'll talk about it after the fact.
i like not to worry unless there's a reason. i'll get nervous just before i go, but until then...what can i do?! nothing at all....
so i'll keep busy, do my work, carve my pumpkin with my kiddo tomorrow since there's no school. family is in town. two birthdays coming up. my gparent's 60th anniversary today. lots to distract myself with. 
andandand...best part... dishes are done and so is laundry!!!!


so today, i truly get to relax. well, i have a lot of work to do, but i can sit doing it. which i need. b/c if i went another day pushing myself....i can already feel it a bit. i need this day to relax and i'm ohsograteful for it =D


in other news, i came up with a title for my book, and i do believe it's pretty awesome, if i do say so myself. not divulging yet, but soon enough...


maybe i'll write more later. for now, i have work to do and not much to say....

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!!

Nothing to say :)
Just like it tells you....first post. Wrote all I really wanted to over to the side. My reason for starting this.
As of right now, I just ate a ton so I can be sleepy and pass out. I took an early nap because I had an exhausting day. This damn Megace (progestin) my rheumatologist has me on is fabulous as far as gaining weight, but the side effects are horrendous.
I've gained 14 lbs in a month! So super pumped about that.
I'm not even 5'3" and I dropped down to 88lbs......again.
So today I was over 102 and thrilled as could be. 
Whipped out my phone and took a picture of the scale.
My doctor's goal for me is 110, since I was 109 when he started treating me -- well before I became sick earlier this year. But I'd like to be 115. I'm the most comfortable there. So only one more month of HRT. Hot flashes, mood swings (which means an increase in my anti-depressant...back up to what I used to be on so it works on a dual level with both dopamine and seratonin. I was doing fine with the lower dose, but not with this crazy hormone in me!), irritablity/intolerance, night sweats (those kick ass!), excessive thirst, acne (NEVER have i had acne...had sorta bad skin for a month or so when i was pregnant, but that wasn't bad. Heck, I don't even know if this is acne. It's just my forehead and I read a few other things it could be. 
I know there are other side effects, but I can't really think right. The package of graham crackers just made my belly full and ready to go curl up in bed and crash. 
Have to remember to turn the fan on, though. Oh, it gets so horrible. I'm only 31 and I feel like I'm going through menopause. All my weight is going to different spots haha! Not used to that. I'm still super teeny tiny, but to me, I feel ginormous.
All right, that's enough for now.
More tomorrow when I actually have something to say.
Nite :)