Friday, June 28, 2013

How I do my giving lately

Most of you all know, I'm on a pretty tight "budget". I have to even put the word budget in quotes because, in all honesty, I'm lucky enough to be in the position not to have a ton of bills to pay, and most of my money goes towards non-essential things.  (This is because I have made certain other compromises and continue to live with my parents, although I am not sure that is the best situation for any of us, but it's where I am right now.  When I tried to figure out the finances of living on my own, my social security check did not cover rent, let alone food, transportation, or utilities, and so: here we are.) 

Anyways, the majority of my money goes towards some longer term goals - for example, I put a specific fraction of my monthly check away towards Christmas, so that when December rolls around I am able to buy presents for family members, and I have also been saving for a new camera for about five years, and now I'm considering switching to a smart phone, so there's another goal to fund.

And then I've got the regular budgeted costs of smaller things like Netflix & the Internet - one of which I consider essential, and the other which is a big help when you have a lot of flare days, like I do - and things like prescriptions (which are covered under my Mass Health and only cost $3-ish a piece, thankfully, but when you're taking 20 prescriptions, it still adds up) and vitamins (which are ridiculously expensive) and then everyday essentials like soap and shoes and sweaters - I'm not extravagant by any means, but it adds up.

But something that's important to me is charitable giving, and so I make sure that that money is budgeted first - even before my Christmas cash - and I used to just pick a random charity (that I'd investigated, of course) and write a check every month, and that was that.  But lately I've been spending my charitable funds (I love the way that sounds, as if I have unlimited funds to give out, when in reality, some months it is less than $50) in ways that I think are more engaging and interesting, and I'd love to share a couple of them with you.

First off, I still write a check every month: I have 12 top charities, and each of them gets the same amount of my money, once a year. Picking 12 charities that deserve my support was hard, because there's about 12 million - but these are causes that mean a lot to me, (like the local chapter of the CFIDS association, or the Walnut Street Center, where my uncle, who had Down Syndrome, worked & was cared for, for the majority of his life) and I feel great knowing that (even though it's not a lot), I'm helping them as much as I can.

Secondly, I use Kiva, or Donors Choose, the microlending & public school funding sites, respectively, to help fund different projects across the country & the world - Through Kiva I've loaned over $100 in 4 countries, and sponsored four different women in their endeavors to better their lives and their communities.  On Donors Choose, I've helped fund 27 books for a classroom that needed them; markers, white boards & crayons for a kindergarten class in a local school, and musical instruments & art classes in after-school programs across the country.  All things that I think are vital, and that I can give my portion to help, and know that others will contribute as well. So far, I have not been disappointed.  (Another note: Kiva usually has a match program, so try to sign up when they're doing that - like if you put in $25 it counts as $50.  Also they have groups, and I highly endorse the Nerdfighters Kiva group as both active and awesome.)

Thirdly, I'm funding a lot of independent projects through Indiegogo & Kickstarter.  I will freely admit that I, ardent Marshmallow that I am, helped to fund the Veronica Mars movie.  I don't really count that as charity, although I suppose you could make an argument for artistic endeavors and patron-ism, which is basically where I'm going with the rest of this paragraph, but I'm not sure that a studio sure-to-be-blockbuster film really counts as an 'independent project', so that's an iffy one.  What's not iffy are the millions of amazing projects listed on the two sites that need backers ASAP.  The things that I like best about these sites are the wealth and diversity of campaigns that need funding - there's literally something for everybody.  Whether you're interested in the environment, art, food, social justice-inspired science fiction literature, technology and intersectional feminism, or, say, a documentary about CFS/ME, which (as you might guess) has special import to me:

there's always something worth funding.  My problem is always wanting to fund too many things, as opposed to not finding something worth supporting. Another great thing is that the projects are always changing - with 1 month windows, there's always something new to explore: I have recently funded, for example, a 50-state adventure/poster project; a poetry picture book on manners; the aforementioned documentary & feature film; and a Star Wars convention in England for people with disabilities. (Jealous!)

Just as an extra bonus, most of the Kickstarters & Indiegogo projects have rewards, so you're not only doing good & helping fund some excellent ideas, you get to participate & be included in the end product as well, which is both inspiring and addictive. In my opinion, one of  the ways Kickstarter has a slight advantage over Indiegogo is the "remind me" button, which will tell you when a  Kickstarter campaign is almost over, so you can check to see if it's fully funded. Say I don't have the money for two campaigns at the beginning of the month, and Kickstarter reminds me at the end of the month that project 2 is still looking for backers, so that I have another chance to contribute, which is nice. 

So that's my formula for charitable giving lately - 1 part known & trusted charity, 1 part microfinancing loan, 1 part patron of the arts, sciences, technology or social justice: Oh and 1 (teeny tiny) part pocket money to people who ask.  I can't pass up panhandlers, no matter how it makes other people's eyes roll when I give them cash: I don't care what they're spending it on (of course I'd rather they didn't spend it "injecting drugs into their eyeballs", as my sister once put it,) because I figure there's very little keeping me off the streets, and I can't imagine how hard it must be to have to ask for money all day, to be (mostly) ignored or spoken rudely too, to know people think less of you. So, I try to keep a couple of dollars free, expressly for this purpose, even though it makes my mother sigh each time I take the money out of the glove compartment and roll down the window, it always makes me feel better.

All parts things that are important to me, and things that I'm so glad I'm able to support. How do you guys manage your charitable giving, and have you supported anything super fantastical lately that you'd like to share?

Thursday, June 20, 2013

Plus also, my dad's been on sick leave/vacation for three weeks, and summer vacation starts Tuesday for the kids, so: totally fine!

So, one of my biggest problems with this space is that it is both awesome and pressure all at the same time.  Good pressure, but still.  Hoping to start up the daily blogging thing again come July, if only because it'll give me a reason to keep the door closed and the TV off.  But I'm working on some things, some projects, in the meantime.  Got stuff brewing. Doing a little bit of non-blog writing every now and then, even. But there's also been a bunch of family stuff (always), and a severe spoon shortage (also always), so I'm only getting through about a third of my to-do list. 

Oh, and that's not even mentioning the doctor drama, wherein I (yet again) get dumped by my primary care doctor and have to scramble to find a (MassHealth accepting) replacement. (Which I have yet to do: joy of joys!) And how that screws up every single other doctor and specialist I have to see, all because, well - she don't know what to do with me anymore, and she's sick of trying and having more things go wrong? Guess who else feels exactly that same way? But doesn't have the luxury of bailing?  This girl, right here! Although her official complaint was that Zack was taking over more and more of my care, and 'he's not in our network, so I don't get his notes right away and that's not a viable way to provide care.' So... because your computers don't speak the same exact language and it takes a couple of weeks for things to get filtered through to you...? Mmhmm: Not Buying It. 

I knew it was coming - I am not a debutante dumpee, after all - a few months back when she started talking about how the hospital was consolidating referrals and maybe I'd have to start switching some of my specialists over to new ones. Which would mean finding at least six new specialists and starting from scratch with all of them, ON TOP OF leaving Zach, which I am just unwilling to do, instead of just, say finding a new primary care doc. She was quick to point out that it would be easier on me to find a new PCP, probably, in long run, didn't I think?   Well, actually, I think the whole system is beyond asinine, because the person I see the most can't be my 'primary care' and everybody else gets pissy over the fact that I want to see him so often, even though he's the only one who, you know, actually tries to help me by doing things?

As opposed to the lot of you who say things like "It's chronic illness and you'll just have to learn to adapt better" or "If you lose a couple of pounds that might go a long way" (it did not, by the way: I have felt no better at 150 than I did at 200, I was considerable worse at 165 than I was at either of those, so .... shove it?) and "with all these new problems cropping up, it's hard to know where to start with you, so I'm not comfortable doing anything." (Seriously: that last is an exact quote.  Too. Many. Things. Don't. Want. To. Help. With. Any. Of. Them. Screw You.)

So, I've got one more appt with her - my soon-to-be ex-PCP - next week, during which she will help with exactly zero things, probably google half of the things I tell her, and randomly search the network for test results that should have been back weeks ago, and then I have to hit the phones again.  For the ... third time in under five years?  With no guarantees that I can find anybody (in our state's primary care drought) that a) takes my non-insurance, b) understands about chronic illnesses in general, and mine specifically, c) understands that I need to see specialists pretty often and d) will not put up a fuss about Zach and his experiments, because I am not willing to stop experimenting.  

All of which makes me want to spend my time digging out my West Wing DVDs just so I can watch Sam & Toby and Josh and pretend I don't hate the world for a little while.

Monday, June 03, 2013

According to spell check, I have invented three new words in this post*

Do you know how rare it is for me not to have something playing in my head?  The radio, Pandora, YouTube; TV in the background Charlie-Brown-teacher style? Not to mention Twitter, Google Reader (now Feedly, thank you very much), whatever random selection of lists my curiosity has caused me to Google, and now Tumblr?  In addition to the books on my bookshelf, floor, nightstand, and in my purse? Which doesn't even include the tapes of 9th grade history class failures that my memory dredges up, the earwig my mom was humming in the kitchen, the constant nagging of whatever social anxiety issue is rearing its ugliest head at the moment?

It's pretty damn rare, is what I'm getting at. 

I don't like to sit in the quiet because then I can hear all the things I spend so much time trying to mute; feel all the pain I've devoted a large portion of my brain cells into masking.  It's both a conscious thing - depending on what hurts and how badly it hurts, I have to adjust the interference, turn up the volume on one thing (a funny movie, perhaps, or a comforting re-read) in order to try to combat the intensity of the other thing (a 10+ pain day; a migraine that lasts more than a week; another birthday rolling around without much improvement to show for it) - and an unconscious thing: kind of like how, if you really concentrate on it you can control your breathing or swallowing, but if you don't it'll go on without you. 

It's one of the reasons I'm so bad at meditating - sitting, in the quiet, with nothing but me and my brain? And the pain? Seems like a game of Russian roulette to me.  Too much quiet and who knows what could explode, who knows if I'll find all the pieces/have all the spoons I'd need to glue it back together?  Too risky.

But here's the rub - I can't write well without some semblance of quiet.  I was one of those kids who did their homework without the distractions of music or TV (it wasn't allowed in the teacher's household I grew up in), and, when I got older and went to college and could decide for myself, I found it too distracting to try to write a good essay and watch Friends at the same time.  Not that I didn't write M A N Y college essays in front of the TV - my friends and I liked to say (if somewhat unoriginally) that we weren't earning our BS-es for nothing - I could crank out what most of my professors wanted (their own words echoed back at them/a summary of the book to prove I had read it) without much effort at all, and many a course was completed during the commercial breaks of Mad About You

But if I wanted to write?

Really write?  And have it be good? 

That's when I needed - and still need, apparently - a little bit of quiet head space. 

So you can see where Goal A (constantly be distracted, so as not to focus on chronic pain and/or current unhappy life situation) might come into conflict with Goal B (try to write some things that are not completely shitty). 

And the last couple of months - OK, since last summer really, when things started spiralling out of control with my grandmother and I realized that it was going to be a Summer of Suck and that I was going to have to be a freaking Grown-up and deal with Real Actual Problems even though I totally didn't want to - I've been leaning (tipping/falling over into/swimming/basking) into Goal A territory.

Since she died (and my family situation went completely, nuclearly, FUBAR in ways that have left gaping wounds that still haven't even scabbed over, let alone healed), which I can't believe was 9 months ago now, I've been sort of frozen there: emotionally numb (ish - not always) and physically hanging on by the skin of my teeth.

"You've lost weight" my doctors would say, with apparent glee: "That's great!"  Mmhmm: except - I can't eat.  I don't know how to anymore - I am disconnected from food and hunger and fullness and I don't know how to food.  Sounds good, they said.   "Let's add to that," my super-fun/fucked-up body said: "You're definitely in the early stages of diabetes (even though you've lost weight, your numbers are stable, and you barely can force yourself to eat real meals at regular intervals): Let's mess with that even more, give you some new meds and worries/complications about food, and see how you do!" (Hint: I have not done well.)  "Also" said my completely-ridiculous-at-this-point-body "I think you need to be allergic to some more shit, and I know you're trying to eat healthier now, so how about some random allergic reactions to... fruit?  vegetables?  Fruits and vegetables?  The pesticides on certain fruits and/or vegetables that you just didn't wash off cleanly enough?  EVERY MOTHER FUCKING FOOD YOU ENJOY?  How's that sound?" (Hint: Super fun.)

I still don't know what's causing the reactions, although I've just had another round of allergy tests.  When I did them 8 years ago I was literally told not to drink the tap water, because "you are allergic to what's in it."  What the hell is in tap water that I am allergic to? I don't know anymore (who remembers at this point?) but I still drink bottled, so it can't be that flaring up. (She says, as her body laughs with glee.  As if I hadn't learned by now that this shit is not going to make any sense.)

Anyways, aside from the food, there's been other things - health things and family things, and personal things, and feeling sorry for myself things that I could literally rant on and on about for thousands of words - but why spoil all those other whiny posts?  (I will try not to write too many whiny posts.)

The crux of it is, I feel like maybe, I'm thawing out on Goal A a little bit, and am actively hoping that that will help me pursue Goal B. Because I wrote 52,376 words last November, but that story isn't going to finish writing itself.  Because I miss having a place where things are quiet.  Because no matter how many times and how many different ways I have to keep writing this post - the one where I apologize for not being around as much as I'd like and recommit to carving out the words that belong here - you guys always show up, and I couldn't appreciate it more.

I don't have a ton of readers. I would estimate that a more reasonable term for the number of people whose eyeballs will scan across this post would be "smidgen".  But that's ok with me.  Because you're my smidgen, and you're always here when I need you.

So thanks for showing up, Smidges.  I'll do my best (as always - which we know is sometimes better than others) to keep showing up too.

*But spell check is a liar because "unoriginally" and "nuclearly", while horrible adverbs, must be real words.  I will claim Smidges though.