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 🙂