~secret code stuff~

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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Wednesday, September 25, 2013

how to give to charity, Charlie Brown

Originally posted on 10-19-12 on my grandfortuna blog.

I have wrestled for years with how to ‘give to charity’. I’ve donated to food pantries and barrels, clothing and other goods gathered for fire victims, helped with fundraisers, donated to charity auctions, dropped money into collection jars, volunteered my time manning booths, tables, and events. So many ways to help, right?
Through all that, I noticed my own contributions were about evenly matched by other helpers ‘scalping’ off the top. I learned that it’s quite acceptable for full time volunteers to take a percentage off for their personal costs, so while a woman I worked very hard helping wasn’t out a dime, I was out nearly $100 for buying an industrial sized coffee pot and all the fixins for hot beverages for early morning walkers, plus t-shirts I designed and had printed (was awesome finding a stash of t-shirts on sale for $2 each at a hobby store!), plus other various and sundry costs to me personally, and then her ‘take’ off the top was nearly identical to the dollar amount I’d managed to pull in from donations. And that was only one charity event. I felt all the dis- words after that, like disenchanted and disillusioned. Likewise, I’ve noticed volunteers in food pantries taking home food, or volunteers in clothing drives taking home clothes. I have nothing against people doing this if they really need it and can’t afford it, and I know some volunteers who really did. But too many times some of them were people I knew personally, people who *could* afford it. As you can imagine, I eventually burned out and lost my enthusiasm for ‘charity’ work. I began to wonder if some of the antiques I’d donated to a radio auction that would pay for a woman’s surgery had also been skimmed. Maybe I should have looked into making a payment on her bill myself….
 My mother used to drag me around with her taking  Meals On Wheels to the homebound, elderly, and very poor. Excruciatingly poor. Mom was a natural talker and made friends with everyone we met, and all those people were so happy to see her walk through their doorways. I think her happy yappiness and personal interest in their stories was probably as big a charity as the food for them, if not bigger. Some of them actually began to improve their capabilities because they’d get so excited to see her, it inspired them to get up and do their laundry, or get outside and show her a garden or hobby they used to have, and they’d even keep in touch with her outside of the program. She started seeing those people more often as personal visits, and even took a couple under her wing as real friendships. And it was like that all her life, even long after she moved on from volunteering for Meals On Wheels. She always found people to help in some way, always took the time to chat about their lives. One scruffy bum of a guy walked into church off the street one day and begged for someone to help his wife, they couldn’t afford her medication and she was very sick. My mom wrote him a check on the spot, no questions asked. She was a turning point in that man’s life, and he and his family became forces of good themselves with that church. It would take a book to give proper attention to just how compulsively giving my mother was. Ironically, she wasn’t that great of a mom, and I often got left behind or used as a pack mule, certainly got volunteered for many a clean up job or babysitting for other people. Even after I graduated high school and got my own life going, she would regift holiday and birthday presents from me to people who thought she was wonderful for being so thoughtful, or tell me she didn’t have any money to help me out because she just gave $2000 to someone else my age who needed it. It was hard not to be jealous when I was younger, but now none of that bothers me, and I think about how ‘famous’ my mom got for being so kind and thoughtful to everyone around her. Personally, I’m just not capable of being a happy yappy person, I’m all the wrong personality for it, so I kind of feel like I’m in a conundrum when I want to pitch in to charity stuff.
I’ve been on the down side of life, grinding through several years of illness and disability, and I learned a lot of things about people from that side of the coin. For one thing, the reason you don’t see more truly disabled people running around is because it’s so extremely difficult, even with handicapped accessible parking and doorways and bathrooms and whatever else. I had so much difficulty just simply walking from spinal injuries (and too much pride to use a motor cart for a long time) that I nearly stopped getting out of my house at all, and that severely impacted stuff like depression and anxiety, not to mention my health standards. For another thing, you find out just how kind strangers can really be, and I was humbly blown away every time someone went out of their way to make something even minutely easier for me. Simply being spoken to with kindness and smiles made my struggle to keep getting out of my house worth it, and over time helped me make bigger and bigger decisions to set higher goals for myself. I’m a recluse, not a phone person, not the sort for keeping friends very well because of my asperger’s, so the tiniest kindness from strangers meant whole worlds to me, whether I was able to effectively show that or not. Thankfully, I’m coming out the other side of that long, dark tunnel, and I look back on what I went through and appreciate every person who unwittingly and unknowingly ‘saved my life’. And I realized THAT is what my mom did for other people.
Scott and I have been tossing around the idea that we’d like to help someone personally going forward, as opposed to going through organized charities and volunteering for generic donation sites. We’ve heard the stories about people sneaking sacks of groceries onto porches, or sneaking envelopes of money into mailboxes, and we’re wondering if that’s really the right way to do it. What if they’re allergic to the food we buy for them? What if someone in the neighborhood steals out of mailboxes? Everything we could think of, we could find flaws with. And we looked into paying on hospital bills for others, sometimes you can’t just walk up and say I want to pay $100 on this patient’s account, partly because of patient confidentiality, partly because sometimes accounts have to be set up for gift payments so it won’t screw up insurance, etc. It’s a mess. And on the rare occasions that we have given money as presents, we’ve been disappointed to learn that it all went to a new tattoo or something, instead of a bill or basic needs. We’ve been scratching our heads for a couple of years over how to really help someone.
While I was so very sick, there was a woman named Sandy in my favorite grocery store who mostly bagged groceries, helped people out to their cars, and brought carts in. I think she’s about my age, but her hair is already all white. I’ve seen her out in all kinds of nasty weather doing her job, and often wondered why she didn’t move on to a different sort of job at her age. I got to know her over time because she was one of the kinder people I’ve met. I had so much difficulty even lifting things out of my cart about 3 years ago that she would unload for me, and then bag and reload. Then she’d walk with me shuffling out to my car while I hung onto the cart for support. She seemed intuitive to my physical disabilities, and eventually we started talking and I learned that one of her good friends had developed a nasty case of Guillain-Barre after a flu shot, and spent a couple of years in and out of a hospital and care facilities. Since we see each other for less than 5 minutes 2-4 times a month, it took nearly 4 years for me to learn other things, as well. Her son and my son-in-law (about the same age) were both out of work at the same time for about the same length of time. She originally came from another state and doesn’t have any family around here. And over the last year her husband had the kind of heart attack that required extensive surgery and created other problems, and she’s been the sole source of income through all that while he lost his job and insurance. I have to interject here that she’s one of the most matter of fact people I’ve met. Nothing she’s ever told me was said with self pity or victimized attitude. That’s just life, you plug away at it doing the best you can, and you shake your fist at the forces that are bigger than you, like the government for taking away his benefits and now it’s all cash and the bills are tight, despite everything you hear on tv about hope and change and health care for all. This woman is remarkably grim and tough, and suddenly tells me a joke and laughs about life. She has no idea how much she helped me through the dark side of my own stuff.
I got an idea last month. I told Scott about Sandy and asked him what he thought of maybe helping her out this year, as a more personalized charity. He agreed that would be better than dropping food off in a bin or putting coins in a bucket, for sure, but the next step was how to go about approaching it. I mean, it could get weird. Having relationships with people is like walking a tightrope, and I know from past experience that sometimes being too nice can make everything oh so awkward. Scott and I both suck at being personable and chatty, and I really don’t want to make it weird for Sandy.
So this week she was walking with me to my car (nowadays I’m more like a break for her to escape out of the store for a couple of minutes), and I finally worked up enough courage to just say, “Can I ask you a personal question?” Ug, that could get so weird. But she said sure and kind of shrugged. So I told her I had talked to Scott about the stuff she’d told me this year, and we were wondering if maybe this year, instead of helping faceless generic charities for the holidays, we could slip her a Christmas card. I told her I didn’t want it to be awkward, and I especially didn’t want to get her into trouble at work, and it’s not like we have a LOT of money, but we can certainly share, and we’d rather know what we share was really helping someone. And Sandy was uber cool about it, no gushing (the potential ‘hug’ moment thankfully passed without any awkwardness, as far as I could tell), and said sure, she would slip the card into her jacket and no one would know. And I said “Great, I’ll tell Scott then.” And that was that.
So I guess this is going to get a little more fun than simply putting a sack of groceries into a bin. I’m thinking maybe a gas card, maybe a Pizza Hut gift card, maybe a little cash, maybe a gift certificate to a store, little things like that. You know, stuff that will fit into a card and be fun to get. I think the most awkward part for me is I got lucky. I walk out of that grocery store with salmon steaks and fresh raspberries, and I’m pretty sure she’d never dream of wasting that kind of money on food. Sometimes it’s awkward knowing that she’s my ‘servant’ coming out of that store, helping me to my car, and I’m financially better off, thanks to my own husband being in good health. I can’t even imagine how hard it must be at her age to do such menial work in miserable weather for so little pay, having to smile and be nice to sometimes arrogant people walking out with all kinds of food she can’t afford.
I think the biggest charity we can have is noticing other people, and asking them if it’s ok once in awhile to be nice to them. I know I have a lot of pride and don’t like people making a big deal out of my stuff, and I think she’s like that, too. Some people need the ‘oh you poor thing’, but sometimes they just need ‘wow, that sucks, see you next week, thank you for helping me.’ Sometimes they just need to know that someone cares about their story.
Incidentally, my mom used to call me Charlie Brown, because I was always confused as a child what to do about how I feel. Maybe it comes easy for some people, but this one took me awhile to figure out.


I've been debating with myself about whether I should get this written out since last January. I may or may not be past the scary part, I don't know, but I think I'm finally almost ok with it. I've accepted a lot of stuff in my life. This is probably the weirdest.

I've been living in a nearly continual state of "That sounds like Bell's Palsy" for 8 months now. I first had Bell's Palsy in 2004 and got pretty sick with it, and took way longer to heal than most people do. It also hit both sides of my face, which I read is fairly rare. First reaction to that is Oh wow, both sides drooped. No, the left side went through the nasty nerve pain while the right side drooped, and the neuralgia on the left side lasted for several years, long after the droop on the right side healed up.

So last January I woke up one morning to a sort of numb lower lip, the sort of numb like when your foot goes to sleep or you bump your elbow. Over the next several hours my entire head went numb, just crept slowly up my face and around my whole head little by little. Nothing else ever happened, no pain or nausea. When the inside of my mouth and throat started going numb I went to the ER. I wasn't really scared (my goodness, I've been through so much scarier stuff in my life). I'm very well acquainted with stroke symptoms since my mother died from multiple strokes, and this didn't fit stroke at all. My biggest concern was maybe a pinched nerve in my neck since so much I deal with seems to go back to a car accident I had when I was 19.

Well, they scared me plenty good at the hospital. The very first thing they got on ruling out was lupus flare up in the blood vessels in my brain. O_O !!!!! I know I'm a very lucky person for living this long with central nervous system problems and lupus, but I didn't know this numby head deal was a real thing or I'd have been into that ER a lot sooner. After hours of testing they doped me up on loads of prednisone and other stuff for *possible* allergic reaction. They had no idea what to tell me.

Repeat this in February, and add that my doctor did more testing and discovered I was in one of the biggest lupus flare ups I'd had in years, although obviously scans showed my brain wasn't involved. Repeat the big meds. But again, no resolution, no answers. Just the weird numbness and sparkly sensations showing up and hanging around for a couple of weeks.

I got used to it. Sort of. You really don't get used to your face getting weird sensations, it's very distracting. My entire head feeling like it's going numb hasn't happened again, but my face sure is doing stuff. Part of the summer had doctors and physical therapists thinking my face would be drooping any time from Bell's Palsy, but so far, nothing, even though the neuralgia increased around the base of my skull and into my ears, my eardrums feeling like they were being stabbed while the backs of my ears went completely numb.

I know, it sounds like it should be from my neck, right? But a neurologist told me no, another doctor told me it wouldn't do that, even a physical therapist didn't think so. So I've been living with an oddly numbish face for months, like I'm feeling everything through a layer of gauze, with bouts of sparkly itchies around my nose and eyes and my gums feeling weird, my forehead feeling heavy (that comes just before the droop in Bell's Palsy), and my lower lip going maddeningly numb. I've toyed with renaming myself Agrajag because I've bitten my lip and chewed up the insides of my cheeks so much this year.

Nearly 17 weeks of physical therapy so far over 4 months this year has been focusing on my neck and upper torso. After reaching a point where I can finally tolerate deep tissue ASTYM at the top of my neck and base of my skull (which is actually working after decades of nasty pain, what a relief!), the sparkly numbness is revving up again and it's all I can do to keep my hands off my face. After the initial Bell's Palsy in 2004 I nearly dug holes by my mouth and eyebrow on the left side for two years until my doctor feared I was encouraging cellulitis in my face, which is perniciously difficult to cure once infection embeds into the skin. I concentrated every day on keeping my hands off my face, and even woke up to unconscious scratching in my sleep and made myself stay awake so I wouldn't start scratching in my sleep again. All this was on top of the worst headaches I'd had in my life, which was on top of the constant neuralgia in my facial nerves with the stabbing pain in my ears.

The pain itself is nearly gone now. I feel naked without it, I have lived with it so long. I should be celebrating and dancing jigs at the utter lack of intense throbbing pain that I'd managed to live with for 30 years (I rolled a car when I was 19). But the pain has been replaced with the old itching behind my eyeball, itching around my eyebrow and nostrils, numb lips, sparkly sensations traveling around my cheeks, my tongue and gums feeling weird and half numb, food tasting funny or no taste at all, losing my sense of smell off and on, my ears going completely numb from time to time. The oddest part is this is happening on both sides of my face almost equally. The two halves of my face haven't felt equal probably ever in my adult life. Between that car wreck starting all the trigeminal and occipital neuralgia and then the Bell's Palsy doing weird creepy things, I've gotten so used to NOT feeling the same thing on both sides of my face that it's unnerving me aplenty to be feeling both sides the same way for the first time in 30 years. Hooray, you say, I should be happy! Ok, I say, YOU walk around with a numb face like this...

Nerves take a very long time to heal, but they say after so long a time that's all the healing you get, there is no more. I'm praying this is healing and not part of another surprise coming down the road for me. Ever since they checked my brain for lupus flare up I've been keenly aware that once something like that ever does happen, everything I'm trying to do right now might be over. What if these are warning signs?

It's hard to live with something big and scary every day and not bring it up all the time, but about the only way I've been able to live with this is to just never talk about it. Stay busy, keep my mind focused on doing other things. But this last weekend was huge. We broke through a wall in physical therapy with the deep tissue ASTYM. For the first time in 30 years I've been able to lift ten pounds of sugar and do upper body core strength exercises without triggering a certain very nasty pain up the left side of my neck. I'm a very strong person, lived for years on handfuls of pain pills and muscle relaxers while I kept working, and after that fell apart I've been doing everything in my power to avoid spinal surgeries. The only thing left after I run out of options is to just start frying nerve bundles, and I'm already high risk for surgery complications because of lupus and diabetes. I either find a way to get healthy, or I admit defeat and go back to pills and a desperate attempt to make my nerves stop screaming at me by simply killing them. I've been told by a couple of physical therapists I'm one of the worst cases they've seen for scarred fascia tissue at the base of skull, thanks to nearly ripping my head off in that wreck.

I'm not going to complain at all if I live the rest of my life with facial numbness, tingling, and itching, no matter how maddening it gets. Sure beats the nasty pain I lived with. Still, at the back of my mind is always going to be I really really hope this isn't my brain skating around the edge of a lupus pond...

All I can do is keep going. I said my goodbyes and I love yous a long time ago. I honestly never dreamed I'd make it this far, much less wind up in better and better shape. I am healthier now than I've been my entire adult life. I'm in less pain now than I've been my entire adult life. But if I suddenly disappear, you guys have an idea why.

I wasn't able to write that when it was the scariest. I'm fine. (I'm pretty sure...) Nothing else seems to be going on beyond the weird nerve stuff around my face. My headaches are all but gone, my nasty neck spasms are nearly gone, and I feel like my nerves are in a little bit of shock. I'm praying that this weird stuff going on is nerves healing. Maybe they're running diagnostics or something.

Thursday, September 19, 2013

Navigation for other things I've written

Star Trek posts
This is your brain on JJ Abrams- "Call me Jim"
I Forgive JJ Abrams
Star Trek Into Darkness movie review- SPOILERS

My movie reviews on NerdMovie
The Adventures of Buckaroo Banzai Across the 8th Dimension (1984)
really good chicken soup
Italian Chicken Fingers
Loca Chili Bake
Campfire Scrambled Eggs
Old Fashioned Chicken Stock
Stargate Pie

This is a work in progress.

I apologize for this weird blog entry, but I'm not in the mood to shell out more money at this point (after the big Xanga migration kickstarter, of which I am a top supporter) just to change my link colors on my new WordPress blog so they won't disappear maddeningly into invisibility. I love creating workarounds anyway, very cathartic for this aspie. So while Xanga is still busy rebuilding their command structure in the new servers after moving millions of blogs over, I'm combing through my scattered  content and creating a new index for easier perusal.

Wednesday, September 4, 2013

Aspie Overload


I'm not one to whine online. I know I really hate being dragged down by other people's whining. I'm not talking about genuine emotionally healthy and good writing skills sharing of the suckiness, more like when there is no point except a full blown pity party fishing for validation and pats on the head. You have no idea how many times I've actually heard that. "I just want validation." "I just want someone to pat me on the head so I'll feel better." I personally don't feel validated when people in comments assuage me with dysfunctionally chain yanked sympathy, and I hate being patted on the head, even metaphorically.

But I gotta whine. ~omg I gotta whine~

After going through another stupid reaction to another medication (of all things this time, TYLENOL) and finally getting to a real allergist, my growing list in my health history now includes what boils down to 'autoimmune reaction disorder'. Sweeeeet. 'Splains all the food reactions, med reactions, stress reactions... I've spent the last couple of weeks sludging along on more zyrtec than the bottle says to take (doctor insisted) and NOT taking a single thing to alleviate pain, discomfort, depression, whatever.

I don't drink. I got off Xanax in 2012, took two years to get off that stuff and I never want to go back on benzo meds. According to a cousin of mine who has successfully conquered meth addiction (that is very very rare), getting off Xanax is comparable to getting off meth. I believe him. I stopped taking muscle relaxers because they mess with my head. Skelaxin has me weeping, Flexeril has me wanting to pick up a real knife and really stab people the first hour after taking it. I can't even joke about it. Ever since a severe illness in 2007-08 a number of meds get me so weird that I don't dare walk out on my deck in case I might think it would be cool to jump off and float around. Lyrica sends me into psychotropic bizarro land. My med list was finally whittled down to half a Norco twice a day. Seriously. I couldn't handle more than that, but at least I had *something* to get through the hardest parts of my day. And this kind of stuff is crucial because I'm allergic to ibuprofen, which is basically everything that's not Tylenol.

So yeah, that's gone now, too.

I'm actually doing fantastic. Decades of lupus and fibromyalgia flares and handfuls of medications and years of illness, this last year has been phenomenal, probably the best year I've had in my entire adult life. I'm not pain free but I'm slowly decreasing the pain levels and increasing mobility and energy with lots of physical therapy and regular workouts, a very nutritious carb restricted diet (I'm also diabetic and can't take the meds), good hydration (no sweet drinks or alcohol), and quality rest, even when I don't sleep well.


But I want something so bad I can hardly stand it.

I'm dealing with the depression head on and my psychologist is so pleased with my progress. My doctors are so pleased with my physical improvements, even when they seem incremental. My family is so pleased that I'm more capable of taking care of myself, even on my worst days when I can barely think straight. I am able to stay on track with daily planning now. I struggled with that for years.

My shining glory in all this is Asperger's. I can try to hide it but I usually glow like neon before too long. One thing I've noticed during all the medication lowering is how difficult it's getting to hide or suppress my behaviors. I've been practicing on social interaction for years and I'm getting better and better at it, but that only means I'm self monitoring well, and I'm doing that amidst all that other stuff going on with me. IT'S HARD.

Today is one of those days where I'm worn out. Too many things have been happening for too long, and I feel like it's piled up on me. Today I can't seem to shake the feeling that I'm on my face in a ditch because I suck at handling everything, and I've mostly been hiding in my cave, not interacting much. It's crucial I not go back to that. I've spent years at a time reclused away from the public, and for me it's just not healthy.

Today I want to pop a pill. I want a brandy. I want chocolate and coffee and loads of sugar. I want to go blow $1000 shopping and I want to curl up and go to sleep all day and I want to get angry and say it's not fair.

But I'm going to do something else. I'm going to ask myself where I will be a year from now. I asked myself that 5 years ago when I was very sick, so sick I thought I might even die, and I never dreamed I'd get this much better and be able to do stuff again. Last year I asked myself that and made a plan of where I WANT to be in a year. I've surpassed that plan so well I still can't believe how much I've accomplished with my health and my daily life and my goals. So I'm asking myself today- where will I be in a year? In 5 years? Where do I WANT to be?

I want to see Ireland with my own eyes. Considering how difficult it's been for me to travel, that's a pretty big goal. And I'm not going to get there with a pill today. I'm not going to get there if I distract myself with immediate gratification and short term feel good stuff. I'm going to get there because I made it through a rough day, over and over and over. I'm going to get there because I want to.

The rest of my day can suck it. So I lost a day to pissy depression, so what. At least I didn't cave to medical validation and a metaphorical pat on the head. I may be caving to chocolate though. I need chocolate. See ya.