ah, life with lupus...certainly not how I expected things to turn out! the brain tumor, eh, that seems to be just an extra added bonus :(
anyway, things are going OK
I've been feeling pretty good for the past couple years...I have been taking prednisone 10mg and weekly methotrexate (7.5 mg - 10 mg), which really doesn't thrill me, but if I'm going to feel better, I guess hardcore drugs are what I'm going to have to do. I'm still with a rheumatologist I like and trust, and that's so important to me. I drive about an hour to see him, but I only go about every 4 months or so, so it's worth it.
My most recent lupus-ism was 2 seizures (or somethings...) that I had over the past 4 months or so. The exciting symptom of these was something called "aphasia" - in my case, my language skills got all wonky -- for example, we were going to the ER (because I was experiencing this weirdness) and I needed to tell my husband to go to the Princeton hospital. I could NOT for the life of me come up with the word "Princeton." I could describe it, I could direct him to the location, but the word eluded me -- VERY FRUSTRATING!!
Anyway, had to start seeing a neurologist so they could try and figure out what was going on, but after a whirlwind month and zillions of tests (I called it getting sucked in to the medical vortex --- arg), they really didn't have any answers. I finally went and saw my rheumy, and he was like, oh, sure, that's part of lupus :/ Probably good that I went to the neuro, though some of those test, ugh!
So that's pretty much the lupus update. I'm a bit emotionally bummed lately, it's hard to accept such major life changes and disappointments when life just doesn't go as planned (especially since was such a control freak...trying to let that go...but only doing so-so on that end). It's hard to accept that I have 2 master's degrees, including one in library science, and I probably will never actually get to follow through on a career as a librarian -- dealing with the health issues on top of all those lovely florescent lights found in most libraries make it kinda hard...not to mention the job market stinks and I've been out of the loop for a while now...maybe in the future once life calms down a bit...and I do keep applying :)
On the personal side, we just started homeschooling my 8 year old son -- we're doing a combo between relaxed homeschooling and sending him to an alternative hippie school :) www.voyagerskids.com -- cooking and yoga, robotics and fairy tales, how can you go wrong?? :) He goes there 3 days a week, and we do neat stuff on the other two days - some basic schooling, park days, we'll do museum trips etc. It's going well so far :) I'm glad I am feeling well enough to do this with him, though we're a bit slow getting going in the morning sometimes...but that's the plus of homeschooling, we can have a nice flexible schedule.
OK, this turned into an uber-post, but an update after so long needs to be told ;)
oh and re: the brain tumor (sad that a brain tumor is an afterthought ;), I'm getting regular MRIs (a few a year) and there has been no change, so basically just in a holding pattern on that end...
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