Hair- I gots it

Deciding to grow my hair out last winter was a big deal. Between years of illness and meds, I wasn't sure I wouldn't go bald and stay that way, but I've created a real turnaround and big things are happenin', one of them being HAIR, yay!

I'm going to see if I can grow it out down my back, and if I can continue to stay healthy, maybe next year I can get some pink streaks and blue tips and whatevs. Because Pinky needs to play.

The Boy Who Went Back To Bed

Years ago, I think on the Captain Kangaroo show, there was a book about a boy who was having a bad day, so when he came home from school for lunch he went back to bed and started all over. He took his clothes off and put his pajamas back on and literally went back to bed for a few minutes. Then he got up and got ready for school all over again and insisted on eating breakfast again instead of lunch before he went back to school for the rest of the day.

A number of years ago my dad said something I have never forgotten. "If I knew then what I know now, I'd have gotten more rest."

This is one of those days. I'm stuck in a brunch state of mind, even though I've been up since 3 a.m. and it's almost 11 now. I am in no mood for lunch and whatever the afternoon brings. I want to go back to bed and start all over again, I want another shot at breakfast, and I want to move the hands on the clock back and feel like I got something real done this time.

Recovery days are like this when you're a spoonie of any kind. Yesterday I made an extra trip into town for someone during an emergency and then sat in a waiting room for a few hours. Doesn't sound too hard, you say. Well, yeah, unless you've had multiple spinal injuries and ongoing fibromyalgia spasms from the base of your skull to your knees. I don't sit well even on my best days, to put it succinctly, and it wasn't the sort of event where standing around or walking hallways would have been any better. Nothing triggers my whole body harder than sitting for extended lengths of time. Extended, for me, is anything beyond 15-20 minutes. I don't sit in movie theaters or church or long car trips. Sitting is evil. 

I learned long ago that recovery days are crucial to getting back on track. If I want to be any kind of productive, I *have* to take days off and rest. I *have* to allow my body time to reset back to something besides fight or flight response. If I get impatient and try to keep going or do more to make up for 'lost time', I wind up taking more steps back until I wind up in bed. I used to take handfuls of pain pills and muscle relaxers to keep doing what *I* wanted to do. Joke's on me, pills are really hard on livers and kidneys and immune systems. I had to stop that.

So today I'm grinding through depression and self recrimination and all that other negative stuff that only makes things worse. I'm trying to look out my window at the pretty day and think about a second breakfast for lunch sounding nice and another Harry Potter movie being a good distraction while I 'rest'. I'm so grateful we have washing machines nowadays, at least I can get all the laundry caught up with minimal effort (compared to hauling water and using a wringer and hanging things on a clothes line, or even having to drag out to a laundromat, all of which I've done in my life). I can piddle my way slowly through a few dishes (I've never owned a dishwasher) and poke around the kitchen putting supper together later. But I really can't do much more than that if I want to have a much better day tomorrow. It's either take a real day off today and spring forth tomorrow or tolerate a succession of mediocre days. The hard part is being patient, because I had other things in mind to be doing with this day.

I'm spiking my pain level higher sitting here typing, but I just needed to gripe before I let go and go back to bed and start over. I'm actually looking forward to some bacon and cream of wheat for lunch. Maybe after I get back up I'll meander outside and let my chickens out of the pen and then fold a load of clothes. Getting a load of laundry done cancels out the day being a total loss, right?  

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.

Agrajag

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.

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
Lexx
The Adventures of Buckaroo Banzai Across the 8th Dimension (1984)

Cube Trilogy

John Carter (2012)

Mystery Men (1999)

My own recipes
blueberry buttermilk applejacks
restaurant quality alfredo sauce

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.

Aspie Overload

o.m.g.

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.

PILLS DID NOT FIX ME. I DIDN'T GET BETTER ON MEDICATIONS.

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.

Mother's Day, 25 years later

Every Mother's Day has been bad for me since my little girl was about 5 years old. That was the year I made some poor choices and got very sick and had an abortion right around Mother's Day. I wrote about it on my bluejacky blog several years ago before bluejacky morphed into my hard hitting silly survey site. It was the 20th anniversary of that abortion and suddenly hit me hard. My little girl was 25 when I wrote it. Mother's Day

Last year about a month before Mother's Day, I went through a severe hormone crash, and doubly so. My body started going all wonky, so my gynecologist pulled me off birth control pills, which was enough of a crash, but that in turn threw my thyroid hormone way outa whack because supplementing with estrogen for years can cause a requirement for extra thryoid hormone uptake. So when I stopped the birth control, I zoomed into hyperthyroidism, with full blown anxiety attacks and insanely high blood pressure. My endocrinologist had to crash me down to a much lower dose. The next 8 weeks were a nightmare, and all the jokes and stories you hear about menopause making women crazy suddenly became bizarrely real for me. The world bubbled out into multiple floaty realities, and I could never be sure which one I was in, although I was in all of them and it was all real and I did just fine with it, according to my psychologist. As my body figured itself out and readjusted to its own new default hormone levels, my mind coalesced back into 'me', and everything seems to be fine now.

During that weird couple of months I slid back into my past and exploded with abrupt honesty. That Mother's Day post I wrote in 2008 left out some glaring details, one of them being that I was 'escorted' to that clinic by two men in a car that wasn't mine. Even though they weren't cruel to me, the pressure was immense, and my psychologist very simply calls this a forced abortion. Read the other post if you feel inclined to argue with me- they literally stood guard at the clinic door, and I was restrained during the procedure. Since I was already trying to justify it away in my head, I didn't realize how much like a rape that would affect me, and I never got over the death of that child. My psychologist says this is a pretty common thing when women go through menopause, they go back through all the emotions they stifled from earlier losses. It's so common to keep women on some kind of hormone replacement or antidepressants through menopause nowadays that I didn't have anyone I could talk to about it, having to wing it without meds for other reasons.

This year my little girl is 30, and she popped my first grandchild out the day before Mother's Day. My nerves have been pretty shot. I'm at the age now where I'm experiencing the deaths of loved ones more and more, and having already lost a niece and my own mother in the last decade took a pretty big chunk out of my soul. I didn't want to tell anyone how nervous I was about the possibility of things going wrong during this birth, so I sucked it up and bit my tongue, because it's so much more important to be positive for the new mommy. The relief afterward has been overwhelming. I spent another Mother's Day crying.

I watched the world blab out happy mother's day greetings on twitter and facebook and other places, and didn't really say much. I know there are a lot of very sad women out there who have a very hard time getting through Mother's Day. My own mother's birthday is a month after Mother's Day, so this time of year feels weird since she died a little over 3 years ago. My sister has been going through it without her oldest daughter for nearly 10 years. And every year all I can think about is the kid I never had, and how old and smart and handsome he'd be now. I know it's so very sweet that my daughter had a little baby right on top of Mother's Day, and you'd think that would make it all better for me. But it's weird. She had to leave her baby at the hospital when she came home (nothing terribly serious) and spent her night crying. And I know that's a horrible feeling and felt so sad for her, and I cried too. We know it's going to be ok, but it's still hard.

Mother's Day is over for another year, but we still need hugs. All of us. You, too. And you don't have to technically qualify as a mother to deserve a hug.

 

 

 

Please Don't Bring Merlin Back

I'm growing very impatient with the Bring Merlin Back groupie thing. I joined to watch what's going on partly out of morbid curiosity, because I have a sociology degree heavily anchored with anthropology and psychology. I've never observed a live cult group before, although I've seen a few from a distance. And I have to say, this one comes as close as any to weird obsession. I have bets on that if someone instructs them to drink the koolaid, a few of them just might.

In the real world, one fan does not hold the power to make a staff of hundreds of people do his or her bidding. The group leader ~seems~ to understand that millions more dollars would have to be dredged up and a number of lives would have to screech to a halt and go in reverse to get back to an intersect point where they could pick up where they left off. But the group leader also seems to epic fail to see that playing fan politics like this looks like a mental affliction gone wildly awry. To expect the world to behave this way because a very few people (compared to the entire fandom or world audience) 'work hard' to make it happen isn't much different from a toddler throwing a tantrum or a teenager manipulating relationships or an adult refusing to deal with reality.

I'm not wanting to be mean. I love Merlin so much that I spent good money procuring all 5 seasons, plus a calendar and a t-shirt. There are other fans out there spending much more than I have, buying collectible toys and apparel and traveling to film sites and conventions. IF these kinds of things are what keeps a show from ending, then Merlin would never have ended. Its international success exceeded so many expectations, and most of us feel so lucky to have seen it or been a part of it. But c'mon. Investing one's emotional belief system into remolding a television show via a fan army of swooning believers isn't how the rest of us want it to go. I do NOT want Merlin back if it means a handful of fans become the boss of everyone who ever created Merlin, and I especially do NOT want those fans to be the boss of Bradley and Colin.

I love the way Merlin ended. I bawled my eyes out, yes. I've seen a lot of Arthurs and Merlins come and go, and this creation was such beautifully crafted story about such a deep friendship, and how that friendship survived through thick and thin and eventually led to the United Kingdoms. We watched a core belief system rebirth through the seasons and in the end came down to a serving girl on a throne because of the utter kindness of her king. THAT is what Albion is all about. Albion is a dream that we are ALL equal, that we ALL matter, and that we treat each other with respect and courtesy, not drawing lines at status. Because Arthur had such good friends, he was a good king.

I do not want obsessive fans to change that. Arthur dies in all the legends, and I think this version of his death is fantastically beautiful and symbolic. Everything in the last two episodes is very symbolic- Merlin stuck in the dark cave while the battle begins in the dark, brother and sister both dying by swords forged in the dragons' breath, an actual dragon being Arthur Pendragon's pall bearer, and much more. I wept not just for the death of Arthur, but for how absolutely beautifully done that entire last stand was executed in film, how wonderfully uplifting the entire series was, how much it has actually helped me in my personal life to believe in good things during rough times.

I thank Bradley and Colin very much for being Arthur and Merlin. But I never want to see them do those roles again any other way. I vehemently do NOT want obsessed fans to change what is in MY head by bullying the market with faked email accounts and spamming. I'm sorry those fans need that to hang onto, and I do understand that sometimes we really do need something concrete when our lives need meaning. I don't want to make anyone feel like I am making fun of them, because I'm not. I have observed and not said anything for a long time. But as an American who has watched this 'international' group execute 'actions' to bring Merlin back before some of us have seen season 5 aired in our country (or even season 3 in some countries), I think they do the rest of us fans the discourtesy of not caring what WE want.

I want Arthur to rest in peace for awhile now. I want to make up my own fantasies about him rising out of Avalon again to join Merlin. I want that sparkling effervescence of 'maybe'. I want to move on and become the sort of person who would also be noble and patient and true like the rest of the supporting characters in Merlin.

I have been part of a number of fandoms, and while I appreciate that fan support can sometimes bring a show back long enough to bring a little closure, I also understand that sometimes a show really is simply over, at least in the real world. In my mind I carry on to my own amusement, as is should be. Stories give us something to occupy our thoughts while we get through mundane or difficult stuff, and stories can even help us with problem solving our own relationships and decision making. To turn a story into a production on demand taints the joy of those creating the story to begin with (after all, it WAS someone else's idea), and neglects the feeling of pride in their accomplishment.

I would invite the fans who demand a different sort of closure to create and publish their own stories. Instead of just demanding that everyone else drop whatever they're doing to please them, grow up and put the work into it yourselves. Invest your own money, dedicate your own hours of labor, form your own teams and produce something wonderful for the rest of the world to read or watch. The whole Merlin and Arthur field is wide open, anyone can interpret it any way they want. But don't think you can dare to turn our Colin and Bradley into puppets that you pull the strings on. Not cool. They have so much potential to go on and do so much more, and I want to see them continue to excel in other work. Please accept that they are actors, not dolls, not the real characters, not enamored of themselves as the fans are. They are simply men who get paid to fill roles. And we love them, that's ok.

I rarely cross post my stuff, but this one is going on multiple blogs I have strewn across the ethernet. Those of you wonderful lurkers who stalk all my stuff, sorry for the redundancy, but this feels important. Thank you for your time.

Ode to Joy

I have lupus. It affects my brain. I've covered the loss of ability and severe depression I've been dealing with for years in previous posts, so I'm not going to repeat any of that.

This post is about looking forward. How can a person see a future with their brain falling out? I have been 'brain training' for several years getting ready, because it's not something I'll be able to control later with will power or a simple decision to behave a certain way or have a particular attitude. I've already had a taste of the mentally crippled lifestyle I'm headed for, and I know it could happen again at any time without warning, and I have no promise I'll pull out of it next time like I did this time.

 

In the confusion of forgetfulness and mood swings, there has to be a behavior foundation, a rock to stand on, a familiarity to flee to for comfort. I've known people who have gone through strokes, injuries, and illnesses that have affected their personalities, and the people who care for them. I know it's hard.

The hardest part is trying to keep the feeling of some kind of control as it's slipping away, or trying to get it back after it's simply just gone. That leads to no amount of frustration, anger, sadness. I don't want to be angry and sad. It seems to me that the best way to go forward is by learning to let go of everything now while I can, so that I don't try so hard to hang on and make myself, and whoever takes care of me, miserable.

 

Scott is my best friend. He sucks at romance, and he's not the wordy comforting type, but he's got an instinct for making me laugh like no other. Over the years I've developed a complete trust in him even when he does everything wrong and backwards. All I have to do is sit back and let him be the person he is. I don't have to watch what he's doing in case he's wrong because I ~know~ he's wrong. Our lives are very cartoony sometimes, and it's something I've learned to appreciate.

Because of this trust, I have experimented with allowing things to get ridiculously silly and just laugh with him at everything. I discovered a joy that you don't get with monitoring the moments for stuff going wrong. I'm not saying let the house burn down, but it's got to be ok for someone to burn the toast or even plow through a garage door (that happened at a neighbor's house) if we don't want to become bitter people as we age. It's ok for real life to be a silly sitcom or live out your own cartoon network.

 

Every day I practice allowing spontaneity to happen. I'm not a spontaneous sort of person, so this, I think, is key to my 'foundation' attitude when I start losing brain control again. Some days I forget things, important things, and aside from forgetting to write thoughts down as they happen into a list or something because I know I'm going to forget within minutes or even seconds, I just let it go. Even with my brain working pretty good this year, I missed my own daughter's 30th birthday, a milestone, especially as she's my only biological child AND she's pregnant. She told me several times she would be 30 weeks along on her 30th birthday. I knew it was coming, even bought her a card. A week after her birthday passed, I remembered. And a week after that I finally mailed her birthday card. I could have kicked myself and felt bad and either made a big deal of it or moped around the house about the epic fail, or I could make a funny story of forgetting my daughter's birthday and share it with people. Which I did. Mostly people are too busy with their own stuff to understand the portent of my funny story, that as young as I am, I am already suffering some memory deficit. But that's ok. It'll be one of a succession of funny stories.

I remember my grandmother and great-aunts telling funny stories about their marriages and families when I was a little girl. I was too young and inexperienced back then to understand they were dealing with emotionally difficult situations. I look back now and appreciate that my memories of my relatives talking together are full of laughter and silliness. It would have been such a drag to hear them all whining and moaning about how their lives suck, which seems to be the way people carry on nowadays. I don't want to be remembered like that, and it's not easy training myself to be a fun person to be around. I have Asperger's, I'm a natural born griper. Or rather, I'm a natural born pointer outer of incongruity, as it were.

 

The world doesn't have to be logical and make sense all the time. I married into the most illogical family I've ever met, and they seem to be surviving, albeit with mountains of inherent self destructive traits, but still carrying on the family genome into the future. Humanity has survived like this for tens of millennia. Just because I was born with a Vulcan brain doesn't mean I can't learn to enjoy the moments, right? And that's what I want to do, enjoy all the moments I have left. I don't want to be left alone with my crabby self in a room because no one can stand me, or because I'm difficult to interact with. Goodness knows I don't mind being left alone for long stretches, thanks to the Asperger's, but that's an aloneness I choose, not one that I get stuck with because I suck.

The little things are important. A color I like. Something good to eat. Watching someone else giggle or absorb themselves in something they love. If I lose my ability to understand the moment, at the very least I still want to be capable of enjoying it, and I think training my brain to let go of trying to interpret something intelligently to myself all the time is the first step. I'm a natural problem solver when my brain is working, and I'm very good at interpreting thoughts into words. But I've been in the place where strings of words don't make sense, where I can't follow a simple story on tv, where books turn into a gobbledygook of lost symbology. In those times, I can either wallow in despair and grief, or notice something is pretty or funny. My brain training requires that I spend time every day noticing simple things without thinking about them, and emotionally reacting with enjoyment. I feel (I hope) that laying this foundation as a learned reflex will help me and others around me cope better when the next lupus flareup affects my brain.

 

interruptions

One of my biggest personal challenges is feeling like I'm a cosmic target and taking offense to the universe at large. I was born with this baditude on the autism spectrum. I see everyone else's 'stuff' that gets in the way of me humming along my little path as me being gleefully picked on by the dark gods of old. You know, like I'm so cool that Satan knows my name and wants to take me ~down~.

I know it's not really like that. I know psychologically that is a small child mentality, immature if I can twist it into something cute or funny, ugly if I can't. I know everyone on the planet has crap loads of stuff to deal with and other people's crap loads of stuff getting dumped all over them. I know it's not just me and I'm not really a target.

But I sure can't help noticing how exquisitely timed it seems to be... Even Scott concedes that I sure do seem to catch the weird perfectly timed cosmic arrows more often than not. It just doesn't seem to fail that when I *finally* catch a break and actually feel good about my day, even dare to feel happy, within seconds the phone is ringing and there it all goes again. Someone is having a crisis, and I'm the first one they call.

I should feel flattered. I'm a hero! I'm so awesome that people think of me FIRST for comfort in their darkness. I'm needed and loved and even admired. But I'm also autistic. I usually don't regret anything about being ASD, I like my head the way it is, but as I've grown older, I'm understanding more and more that other people seeing me as being the one who is able to help them handle their stuff is not only a huge compliment, it means I have wildly succeeded in living with my ASD and especially my yawning gaping social deficit.

I take things personally that I shouldn't. I am the one who actually takes offense at someone dying in the middle of my good day. I'll be there johnny on the spot if they didn't, heck, I've even saved a life doing that, but after it's handled, I find it very hard to let go of the despair of not having gotten something done that I wanted to. It's not a big deal. But yes it is. And I cycle through the depression of my day being shattered in pieces along with the depression I feel over whatever bad happened. I'm not the sort to stew or worry, I certainly don't dwell because I'm so easily distracted, but for some reason, I feel pretty hateful at the most inappropriate times about other people's bad luck. That kind of shocks me when I think about it. I mean, I would feel terrible if other people were hating me behind my back for wrecking up their days, and being ASD, I'm pretty confident I have been doing that all my life.

It has taken me most of 50 years to figure this out. I guess I'm pretty lucky. Some people don't make it this long, and some people never learn it. I just know I don't want to take bitterness and complaining to the grave with me, and I especially don't want to be remembered for that, or for someone to feel relieved I'm out of the way now. Actually, I don't think very many people know it's like this for me because I'm sorta good at hiding it, and since I'm usually embarrassed by it later after the emotion has passed, I hate sharing too much of myself just in case, you know?

I spent part of my week hanging around a hospital for Scott's ex-wife having high risk surgery. She would have died without the surgery, and she could have very likely died having the surgery. She is my age. I can't imagine how hard it must be to face absolute certain death like that. I've had near misses, but nothing like that. And no one else came, just me and the daughter I raised for her. No one else bought her flowers, which bothered me very badly. I took flowers in yesterday and we had a good visit. She made it through the surgery with flying colors, against quite a few odds.

I used to think my marriage was so tainted, my relationships with Scott's family so skewed, in large part because of this person in his past. Over time, I think I have learned more stuff about myself because she is in my life, and I feel like I wouldn't have grown to this level of self awareness if I had never known her. She has struggled for so long with drugs and alcohol, her health has been wrecked, her relationships shredded time and again. A long time ago I imagined what it must be like to be in her shoes, to wake up to the depression she must have to face every single morning, and maybe the only way you don't kill yourself is to take another drink. She found a way to go on. And she has found a way out of that path, too. It was long and hard, and she took so much crap for it. Granted, she dished it out. But in the end, she was the one sitting up smiling and happy yesterday, thanking me for always being there for her daughter, telling me I am a blessing, and behind our yappy chat it was all I could do not to cry, because not one single word was spent on self pity, anger, or shaking her fist at the cosmos. So now I cry alone at home. I don't know if anyone else cries for her besides her grown kids. I have a hard enough time pretending and acting like I can be that socially interactive, never mind all the angst around the emotions that come with it, and here she is, open and honest and beautiful and even sweet after all this stuff. I would be hiding in my cave not talking to anybody.

Her girl is going to make her a gramma this year. She has everything to look forward to and be happy about because she isn't dwelling on other people's past judgements or fretting about what anyone thinks of her. I realized yesterday talking to her that everything I see as an interruption, everything I see as more work, everything I see as me having to drop my stuff to help someone else- is a blessing. I'm autistic. It took a woman's lifetime of alcoholism and near death to show me how to bridge over to that. And I'm thankful I had a chance to learn it.

Going forward, I want to see the blessings that happen around me. I don't want to miss them because I'm too wrapped up in my own head and the dodgeball I play around how other people perceive me and react to me on top of the plethora of ways I react to them. I want it to be simple. I'm tired of negativity and all the ways people judge each other. I grew up with that, so maybe that's where the feeling of other people being interruptions in my day comes from. I pray every day that I'm good for other people. Yesterday, the person I least expected was good for me. I still get tears thinking about how lonely life would be without the interruptions, you know? Everyone calls on me, no one visits her on a day she might die. That is blowing me away.

So, I get many blessings in my day... New way to look at the people in my life in my ASD head.