Wednesday, December 12, 2012

Arrggghhhh !

I have reached a breaking point here.

My child needs minor surgery.  A tonsillectomy.  Nothing to get too stressed about (maybe a little).  Except....

My parents think I should get a second opinion.  This doesn't seem like a stupid idea to me.  A doctor several years ago told us she should have this surgery at some point.  Now her migraine doctor, and the sleep specialist my daughter visited, are saying the same thing, and want us to see a specialist.


Perhaps it's not really necessary to see another specialist.  But I'm not morally opposed to it.  The worst I could say about it is that it might be unnecessary.


In order to see another specialist, I'm probably going to need my husband's cooperation.  Somebody who understands the way my brain works (and he's the only one), and who knows the route and what obstacles I might encounter--one-way roads, parking lots that can't be turned left out of, and so forth.  And my husband doesn't want to get another opinion.

I am sick and tired of not being able to go places without someone's help, which is tantamount to having to ask permission.

Without his cooperation, I can't do this thing.  And you'd think I could ask my father (my mother doesn't drive), but he often doesn't understand.

I'm trapped.  My husband doesn't want to help, and my father isn't going to understand why I need help--he's just going to want me to do it.

Having my parents paying more than half of our household expenses is putting me in a position where I don't feel I can be blunt and say that I need help and if they won't help, I won't do it.  And it sucks to need so much help.  I already need all this help with money, and then I need help with driving, and I can't fix anything around the house when it breaks down because I don't recognize tools or parts of machinery.  On top of that I have to keep asking for help from the government, and no help is forthcoming.  Every relationship I have with anybody is colored by my having to repeatedly ask for help and understanding.

I try to explain to people--I don't remember anything I see.  I don't recognize my own children.

I've wondered if this is why I've lost my last friend, who was suggesting places we could go that I couldn't go to because I can't drive myself.  Maybe that was at least one of the straws on that camel's back.  I try not to torture myself with questions--did I fail to recognize her somewhere?  Did I fail to see a critical facial expression?  Time to go on with my life here.

But it's just like high school--me trying to convince people that I'm having trouble doing things, nobody believing me, trying to convince doctors and the Social Security Administration instead of teachers and guidance counselors.

And this morning there was an article someone had posted on my facebook page: .

And I thought (not for the first time) that I'd love to live in the world of cancer patients.

I don't know anything about cancer.  I've never had it.  Please, God, don't give me cancer.  I'm not really jealous.  Of the cancer.  But I'm jealous of the world they live in.  A world, where, according to this article,

  • -You have a disease
  • -You have local support
  • -You have national support
  • -You have millions of dollars being donated daily to the research of your disease
  • -There are millions of resources on a financial, emotional, and educational level at your disposal
  • -The stigma associated with your disease is one of bravery, championship, and fight
I selfishly want people to look at me and say what a fighter I am, that I keep going in spite of getting so horrible sick over and over again, in spite of not being able to hear people and recognize people and drive easily.  How wonderful it is that I keep a household going single-handedly in spite of all of that.  But nobody's heard of what's wrong with me.  There is no support, no community resources (no community at all, in fact), and no end in sight, ever.

I can't keep doing this.  Trying to explain over and over again what's wrong with me to the same people until they leave because they don't understand why I can't just get a job, or why I can't drive to someone's house, or to a party, or a wedding, or a hospital where someone is sick, or a funeral.

It's already occurred to me that I only know how to get to one hospital, and it's an older one, and if my daughter doesn't have surgery there, I won't be able to take her.  I might not get to visit at all.  I want to be there for my child.  I'm going to have to insist that people watch my other children, and insist that they help me visit my child.  Yet another argument that I don't want to have.  And with winter coming, I just might get sick and not be able to be there anyway.  Maybe we can put it off until summer, when there's a better chance I'll be healthy.

We had hearing tests the other day, and I was glad my husband didn't work that day, so he could drive us.  All of my kids passed.  And I passed, darn it--by one point.  Which means I probably have a fairly serious hearing problem, but I'm one point short of an official diagnosis.  I have a Social Security hearing coming up in March now, and no diagnosis of anything, no way of getting a blood test for the pneumonia vaccine that I wasted my time getting....I'd like to get some diagnoses of some of my neurological problems before then.  One of their own tests showed I have the visual memory of a seriously retarded person, but that test apparently didn't count for anything.

I am frustrated to the point of refusing to drive myself anywhere I don't already know how to get to and refusing to talk to anybody about any of this.  Gee, that reminds me a lot of what I was like in high school.

Tuesday, December 11, 2012

Cory Booker and Food Stamps, Part II

Continued from yesterday's blog post:

So, I've been to the grocery store, and with the help of a notebook (and my 16yo daughter) I've done my hypothetical shopping for a hypothetical vegetarian, 40-something male.  I'm pleased with the results--when I'd gotten everything on my list, I still had $2.71 left over, with which I purchased a good-sized cucumber, one pound of carrots, and two oranges.  If I really had to eat this food this week, I'd be pretty happy about the extra produce.

Here's what I bought, and the prices:

$  2.34     1 box ramen noodles (12 packages)
$  1.89     10 bananas (3 1/2 pounds at $0.54 per pound)
$  1.57     two pounds brown rice (store brand)
$  1.68     two one-pound boxes of spaghetti for $0.84 each (store brand)
$  0.88     one 26 1/2 ounce can of spaghetti sauce, store brand (store brand)
$  1.98     two heads lettuce for $0.99 each
$  1.50     one 16 oz. bottle of salad dressing (store brand, on sale)
$  3.29     one large package (30) eggs
$  3.16     four 2-liter bottles soda pop (generic)
$  0.59     one large cucumber
$  0.79     one pound carrots
$  1.18     two oranges

$20.85     total

Total calories for the week?  15,924.  That's 2,275 a day.  A little more research, and, wow.

I have just barely enough calories for an average man of Mr. Booker's age.  It would be plenty for me, or one of my kids.  I'd hate to have to feed a teenage boy on this.

It doesn't seem to me to be too bad, though--four eggs and a banana for breakfast, two packages of ramen noodles with maybe a carrot and a few cucumber slices for lunch, plenty of rice or spaghetti and a salad for dinner, plus maybe another piece of fruit.  Not meals to write home about, but enough food to keep going.

It would be tough, though.

I spent (in reality, not on paper) less than $250 today for two weeks for six people.  That's just under $21 per person per week.  With six people, I can vary the diet a lot more--I'm not buying for one, let's say, person-week.  I'm buying for twelve person-weeks, so I can put some variety on the menu.  When our tax refund comes in, I fill our deep freeze with meat.  And once in a while I can supplement our grocery budget with some extra cash.  It's not easy (and I'd hate not to have that tax refund and occasional extra cash), but we're pretty stocked up here--we're even prepared to be snowed in for weeks.  There isn't any organic or name-brand food at our house, but at least my kids don't have to eat ramen noodles for lunch every day.

We don't go hungry.

I guess the secret to success on SNAP is to lower your expectations.  People in other countries eat lots of ramen noodles and rice, or lots of bananas.  On this budget, organic and name-brand foods, as well as highly prepared foods (frozen pizza and Oreos, darn it) are off the menu.  Soda pop is a treat.  Eating out isn't an option.

It's a good incentive to get a job, or to get a better job, if you're lucky enough to be able to find one in today's economy.


Monday, December 10, 2012

Cory Booker, Food Stamps, And What I Would Have Bought

Floating around on the edge of my attention these last few days has been that mayor in New Jersey....wait, I'll go look it up....Cory Booker.  Here he is: .  He's decided to see if he can live off of the equivalent of a food stamp budget for a week.  $27.98.  I for one appreciate his effort--it's amazing to me how many people have no idea whatsoever what it's like to be poor.

But when I saw the picture of what he'd bought, this blog post was born.

Bagged lettuce?  Lots of produce and (were those brand name?) canned veggies and beans?  ORGANIC OLIVE OIL? (gasp)

Mr. Booker obviously needs more practice.

So I've decided to conduct a little experiment of my own.  Only on paper (or it's electronic equivalent).  I'll be a vegetarian (because Mr. Booker is).  And while I understand the concern over pesticides and preservatives, on food stamps one cannot afford to be choosy.  Generic is the way to go here.

And since things cost more in New Jersey than they do here (in Indiana), after a miniscule amount of internet research, I've taken one quarter off the budget.  This is a $21.00 budget.  One dollar per meal.

So here is tomorrow's shopping list:

1 box ramen noodles
2 bunches bananas (not organic)
1 package brown rice (store brand)
1 box spaghetti (store brand)
1 jar spaghetti sauce (store brand)
2 heads lettuce (not bagged)
1 bottle salad dressing (store brand)
1 large package eggs (store brand)
4 bottles generic soda pop

When I go shopping tomorrow, I'll take a notebook to keep track of the amounts/numbers of items and prices.  Then I'll total it up, come home, and figure out how many calories per day it is.

Here's my tentative weekly menu plan.  It's boring.  I'd think that even if I could shop for two weeks instead of one (isn't SNAP (used to be called food stamps) disbursed monthly?), I could vary this diet considerably.


4 eggs, 1 banana.  Every day.


2 packages ramen noodles (it's just as good as a can of corn and a can of peas mixed).  Yes, every day.


Brown rice, and salad with dressing, or
Spaghetti with sauce, and salad with dressing

I warned you, it's a boring menu.  I'm glad I don't have to feed my kids on this budget.  Sometimes I'm pretty close--I've got about $150/week for a family of six.  But hopefully, Mr. Booker wouldn't be too hungry on this diet.  And I've even allowed him one luxury--caffeine.  Mr. Booker and I share an addiction, and I sympathize with him.

So we'll see how this goes tomorrow at the grocery store.  I also have to mention food banks here.  I don't know much about New Jersey, but here we have them everywhere.  At a food bank, I might get one small bag of groceries as an individual.  That would be an important bag.  My family has relied on food banks for a long time.  Many you can only visit once a month, but after eating ramen noodles for lunch every. single. damn. day., I'm sure I'd be thrilled about that bag.  Ooh!  Ooh!  Creamed Corn!  Yams!  Ooh!  Cranberry Sauce.  Cool!

And finally, here are a couple of links to past blog posts of mine that are somewhat related to this topic:


Tomorrow I'll let you know how I did at the store!

Sunday, December 9, 2012

Tomorrow's Adventure

Tomorrow the girls and I are all going to get our hearing tested.  We're going to have standard hearing tests, and then we're going to be tested for CAPD--Central Auditory Processing Disorder.

I was tested for this as a teenager, and diagnosed, but the records were lost.

I hear fine when it's quiet.  I don't miss much.  Sometimes I even hear things nobody else notices.  For many years I could hear high pitches that nobody else could hear.  It's the sounds of conversation that I have the most trouble with.

I don't hear very well when there's background noise.  If the washer or dryer are running, or if someone's washing dishes, I miss things.  I read an example in a book once--a child hears, 'Your goat is dead'., and it's only her horrified expression that alerts her parents to the fact that something is wrong.  Her father had just told her to 'go to bed'.  So if I respond to something in a very unusual manner, it might just be that I'm weird.  Or it might be that I didn't hear what you said correctly.

We'll see if I'm correct in my guess that one of my children has this--the one about whom I've always said affectionately that giving her directions in lists of more than zero things to do is too much.  She's always had kind of a piercing voice, too.  Maybe it's because she's assuming we can't hear her.  I was told as a teenager that I had to lower my voice, that my voice was too 'shrill'.  The voice you hear now is a little lower-pitched than it used to be, intentionally.

Anyway, if I'm at a party where an air conditioner is running, or at church after a service when everybody is talking, I might be for all practical purposes nearly deaf.  No doubt this confuses people.  I could hear them before, and now I can't.  I appear to be ignoring people when I simply didn't hear them.  I reply to things 'weirdly'.

I remember once at dinner at someone's house, hearing my husband say, 'Oh, look, a bug!' and then seeing him pick something up off the table and eat it.  I'm fairly sure that's not what he really said.

If other people are confused, you can imagine, perhaps, how confusing life is for me, as well.  I often don't hearing what's being said, or don't hear it correctly.  Then, on top of that, I don't recognize who it is that said it.  I am basically screwed socially.  And then there's the constant problem with getting lost....

So tomorrow we go to get tested, all five of us.  I hope I can find the place.  I've only been there once before.  And we're supposed to have an hour for lunch during this day of testing.  I've asked my husband for directions to a nearby restaurant, but he hasn't given them to me yet.  If he doesn't before tomorrow morning, we'll have to skip lunch.  There isn't any possibility of me simply driving away, finding a restaurant, and then finding my way back.  I know there are several restaurants nearby.  A there's a possibility that my husband won't work tomorrow, in which case he might drive us there and stay, and take us to lunch.

I hate having to be so dependent.  I can't get lunch without help, can't run errands toward the end of this day, like grocery shopping.  I have to stay at the doctor's office so I won't get lost.  I don't want to have to explain to the people at the doctor's office why we're not eating lunch.  They might think I'm crazy.  They might try to give me directions which I can't follow.  The directions have to be given to me just right, or they don't make sense.  Very simple, with names of streets and very clear landmarks that I can find easily.  And then I have to memorize the route there.  And the route back.  And still I might very well get lost if I haven't had a chance to practice first.  It's as if I'm retarded.

These days, if I have time beforehand, I sometimes go to Google Earth, if I've had the route explained to me first, or if it's very close to one of the few places I know.  It's very confusing, but sometimes I can get some idea of what kinds of landmarks there are that would help me find a place.  I get lost on Google Earth all the time, but there aren't any consequences.  I can spend an hour getting lost over and over and everything is fine.  No harm done.  No gas money wasted.

So, I can't leave any of my children at the doctor's office, because, well, what would happen if I couldn't find the place again?  A crisis would ensue, where I would have to try to find someone (and I hardly have anyone) to go and get the kids that I had just dropped off a few hours ago.  It would be bad enough to miss the last two appointments of the day.  I wouldn't even be able to tell someone where the place is.  It's very close to the family doctor we've been seeing for years, and I still use a map to get to that.

Trying to use my words to explain to someone how to get somewhere is ridiculously hard--I can't even tell people how to get to the house I've lived in for twenty years.

I've been developing a bit of an attitude.  The other day my children needed a ride.  My husband had a meeting, and he could take two of them to a church function at a teacher's house, but he couldn't pick them up.  And he couldn't find anyone to help him.  It looked as if I was going to have to pick them up, and I had absolutely no idea where the house was.  And it was going to be dark.  On top of everything else, I have very poor night vision.  As if I don't have enough to deal with.

There have been times when I've been lost for two or three hours trying to drive to an unfamiliar place.  Once I wound up in another city.  That was during the day.  When I get lost, I can't even find my way home again.

So I called my father.  I hadn't wanted to do it, but he was really nice about it.  But as soon as I told him the address, after telling him my husband would tell him how to get there, he started asking the questions.  Like, "is that near the pool?"  What pool?  I don't even have any idea what neighborhood it's in.  Is there a pool?

It all worked out in the end.  But I am getting extremely tired of trying to keep people from finding out that I have no maps in my head.  I don't want them to think I'm stupid, or crazy, or being difficult.  People just don't generally understand how my brain works.  If I were blind, it would come as no surprise to anyone that I don't know where anything is.  But I have to explain to every single person, usually repeatedly.  Sometimes they never do get it.

It's gotten to the point where I've been willing to have arguments with people--this is just the way it is, and I can't do anything about it.  I almost had one with my husband the other night.  I had to tell him that I could go and try to pick up the girls, but it was quite possible that they'd be waiting for me for a long time as I wandered aimlessly in the dark.  I might very well never have found the place.  And I'm finished apologizing for it.  I wish I could stop being this way, to avoid the arguments with people.  I wish I could just be cooperative.  I find myself thinking it's not fair that my husband has to be the one to drive the kids places, and then I have to remind myself--I've been doing my best to get them to doctors' appointments.  I do pretty much everything at home, in an effort to pull my own weight.  Or in an effort to prove I'm not a lazy slacker.

I really have to work on not feeling guilty because there are a couple of things I can't do.  Once or twice a week, something comes up that I can't handle.  I don't deserve to feel like a failure because of that.

We're starting to try to make plans for what we'll do if my husband gets deployed.  I don't have anybody except my parents to ask for help.  I may have to have my kids help me contact people at their church, where I'll have to explain to people, 'I have no idea how to get my kids to their church activities--maybe I can learn eventually to get to one or two easy-to-get-to places.  And by the way, I won't recognize any of you when I'm dropping the kids off.'

It's not fair that my kids have had to share in my isolation.  I don't want them to stop going to church for a year if my husband's gone.  I won't be going to church--they're all old enough to take care of themselves for a couple of hours at least.  And....I don't want to feel sorry for myself.  I don't want to whine.  But being in a big noisy room full of people I can't recognize is just silly.  I've stopped doing that to myself.  And I am legitimately concerned that my presence will have an adverse effect on my kids' popularity at church.  I don't want them to once again have to be the kids of that woman who doesn't work and might be lazy, or maybe retarded.  I don't want to complain, but I don't want to put myself once again in the position of having to do something that I am going to fail at over and over again no matter how hard I try, so I can watch people glare at me disapprovingly and end up sitting alone in a corner.  Maybe I like myself too well these days to do that to myself.

Saturday, December 8, 2012

Hello !

Some days it's hard to avoid the 'why me's .

I don't wonder why my kids are healthy, or why I have a roof over my head, or even why I (still) have internet access.  Or why dessert can't be healthy and salad fattening.

But I do wonder....why things have to be the way they are with me.  Why am I not one of those lucky women?  One of those women who have hundreds (or dozens?  a couple?) of friends, whose husbands can't take their eyes off of them, who have careers where they can wear cool clothes and hold up their heads when they talk about what they do, who have nice homes they don't worry about inviting people to visit, where they can replace furniture and repair things when they get worn.

I don't wonder why I'm not twenty years old--I guess it's all about expectations.  I expect that everybody ages, so I don't wonder why it's happened to me.

I do realize that a lot of this is fantasy.  Just because somebody looks like they have it all together doesn't mean that they actually do.  And there are others who have horrible problems that I fail to notice when I'm in a mood like this--women in nursing homes, women with horrible health problems (not that mine aren't horrible, if only for a few months out of the year), women living in poverty that I could barely imagine, women living in countries where their husbands own them.

It's probably partly because I live in this wealthy country that my expectations are so high.  Most of the women around me seem to have decent lives.  Maybe it's even partly because the intelligent half of my brain has figured out that if the other half would pull its mental weight, and if I were healthy year-round, I would 'merit' a pretty good life.  As if everybody on this planet gets everything they deserve, good or bad.

I have rebelled lately ('lately' in terms of months) against the idea that I am less than those other women because I don't have those things.

I got up very early this morning because my husband has Guard duty this weekend.  Got dressed (to shoes, as Flylady would say (although I can't afford to wear one of my two pairs of shoes around the house all day)--but my hair is fixed and everything), started that wood stove, did my morning chores.  No school today--we always take that monthly weekend off when my husband's gone.  But most days (when I'm well) I get up reasonable early, get dressed, do chores, homeschool, do more chores, oversee the girls doing chores, play the piano, get online, exercise, pick up after everybody, do even more chores....and none of it matters.  I am invisible.

I've always been invisible.  I was invisible in school.  Intentionally, a lot of the time.  If I didn't try to connect with anyone, maybe I wouldn't get bullied today.  And I learned very early not to be myself.  Not to let people find out how intelligent I was, because then they'd expect even more from me, and I couldn't deliver.  As I went out into the world of employment and marriage and church, I tried to appear normal.  I also tried to be agreeable, and honest, and kind, and all those things I was raised to be.  And I tried to make friends, but I don't know how to do it.  The same way many people wouldn't have any idea how to play a Chopin mazurka, while that came to me quite naturally.  About people, I had no clue.  And no clue that the cluelessness was called autism.  I thought eventually I would figure it out, and start making friends, or stumble into the right group of people, where I would fit in, or at least be tolerated.  I kept thinking those things every time I found myself in a new group--that this time it would work.

Being unable to recognize people, or hear when it's noisy, or find anyplace unfamiliar (or occasionally even familiar), is bad enough, when added to the cluelessness.  But the final nail in the coffin has been my unemployment.  That is unforgivable.

I hid being sick along with everything else that was 'wrong' with me.  I hid it so well sometimes *I* forgot I was sick.  Sometimes I'm so sick there's no hiding it from anybody.  But I can't hide not having a job (I've actually wondered if I'd be better off if I made one up.).  And nothing else matters.  Making sure I don't sleep too much, cleaning the house, playing the piano, trying to be a good parent....none of it matters.  What I do is invisible.  It's as if I do nothing all day long.  I am a middle-aged woman whose parents and sister pay more than half her bills, with a husband who has to try to support the family all by himself.

Sometimes I wonder why I get up in the morning.  I always do, and I don't have any plans to stop--I just don't understand why I'm doing it.

I've watched people who are abusive, or just not very nice at all, make friends.  People who are somewhat clueless, if not as clueless as I am, make friends.  People who have major substance abuse problems, people who make horrible financial decisions, people who aren't very bright at all, people with odd religious beliefs, people who molest children--they all seem to be able to meet at least a few people and form relationships, even if they have to hide parts of themselves to do it.

I am invisible.  When I disappeared from my old facebook page recently, nobody noticed.  This didn't surprise me.  It would have several years ago, but I'm used to it now.

It's a joke that I tidy up the house before Christmas--nobody is going to visit.

In spite of all my whining, I don't need people in the same way that other people need people.  A particularly sociable person might need to be around people 90% of the time.  Maybe an average person might want 70-80%.  That would just stress me out.  Maybe partly because I'd spend that 70-80% of the time trying so hard not to let my differences show, and that's exhausting.  Maybe that's just me being my natural autistic self.  Maybe I only need 10-20%.  What is ten percent, 1.6 hours a day?  10 hours a week?  It's not much, but I probably don't need (or even want) more than 10-20 hours a week.  I suppose commune life would not be for me.

A lot of the time I'm perfectly happy on my laptop, or playing my piano, or reading a book, all by myself.  People would just be a distraction.  As it is, with four homeschooled children I hardly get enough quiet time.  I can't complain--I chose this, and I choose it every year (maybe sometimes every day) when I don't send them to public school.

But I need that 10%, and having children isn't enough to meet that need.  I think we're all biologically programmed to need this.  And I am not going to get it.  I have been tried, convicted, and sentenced repeatedly, everywhere I've gone.

It's hard to watch other people sometimes, people who aren't perfect but are liked anyway, living their golden lives out in the world.  When I was twenty I used to look out my bedroom window and see the 'normal' people walking by.  I know their lives aren't trouble-free.  I know this.  I read the news.  I've known several people.  And in some ways I think I'm a basically happier person than many people are.  It's a Dickensian thing--'how can you be miserable--you're rich enough'.

I really didn't think, growing up, that I'd be poor all my life, either.  It's those pesky expectations again--my parents weren't poor, so it never occurred to me that poverty would be my fate.

It's not the money I really need.  Well, not until I lose my house, anyway.  Money would help.  Decent clothes would help.  You can't tell me people wouldn't look at me differently if I had more money.  But that's what I really need--for people to look at me differently.  Being alone is preferable to being looked at as if I were retarded, or incredibly lazy.  And being alone at home is better than being alone in a room full of people, not recognizing people, not getting approached by anybody, not being able to hear a lot of what is being said.  There really isn't any point to my going to a crowded, noisy place.

Self-pity is like a drug.  I try to stay away from it.  But being isolated is like being too cold, or too hungry--you try not to focus on it, because you can't do anything about it, but it's always there.

Some days I'm quite philosophical about it--what is the meaning of life, anyway?  Winning a popularity contest?  Why are we here?  We're all here for such a short time.  Is what's happening to me really even important?  Am I invisible to God, too?  Are we all?  Is God wondering the same thing in reverse--is he (she? it?) invisible to us?

I'm on a couple of message boards on facebook, and one thing I can't stand is when somebody posts and nobody answers.  I tend to mostly lurk, unless I really have something to say, or a question, but if nobody else answers somebody, I eventually will.  If somebody gets sick and then stops posting, and I notice, after a while I'll ask if they're okay.  We should all be doing this.  It's so easy to be self-centered (it comes quite naturally to me).

The world would be just a little bit better if more of us would reach out to that person nobody talks to.  We might be the only person who has spoken to that person for days or even weeks.  It might only take a few minutes to welcome somebody to the human race.  Even just a hello.

Thursday, December 6, 2012


Today over lunch I discovered a new website about Alzheimer's disease, complete with 10 warning signs: .  My parents are in their late sixties/seventy, and my father-in-law is in his seventies, so I didn't think it would hurt to briefly skim the article.

I was wrong.  It did hurt.  I nearly choked on a ramen noodle.  From laughing.

I have more than half the symptoms on the list........

Having to rely on notes and electronic devices to remember things.

Having trouble with monthly bills--I do my best, but sometimes these kinds of complicated tasks get me into trouble.  I am not all that good with paperwork.  I do my best.  Much better than I used to do years ago, so I guess we can't use this item to 'diagnose' me.

Trouble driving to a familiar location.

Trouble understanding visual images and spatial relationships.

Misplacing things.

All right, withdrawal from social situations.  That one's gotten worse over the last few years.

And I don't suppose failing to recognize your own children is a good sign, either, even though it wasn't on the list.

I've been saying for years that when I one day develop dementia, nobody will be able to tell.

Maybe when I reach my late sixties, my behavior will finally start to make sense to people.

Wednesday, December 5, 2012

And here's another one, still from Aurora Borealis on facebook.

And I'm back to having that 'weird' heartbeat.  I've never had this diagnosed.  It might be nothing.  I wouldn't be surprised, with my luck, if a doctor told me it was anxiety.  I used to hear that kind of thing all the time before we found out I have Common Variable Immune Deficiency and asthma.  'It's stress, it's depression, it's anxiety, it's just a cold....'  All right, sometimes I still hear it.  Well, life certainly is stressful at times--having a major illness is stressful.  I feel fine today, but when I can't breath that is absolutely stressful.

We've been considering the possibility that I have something called 'Selective IgA Deficiency' instead of CVID.  I may have to go ahead and pay the $50-$100 (maybe I'll wait 'til we get our tax refund in the spring) to get my old medical records and see exactly what kinds of blood tests were given over the years and what the results were.  It does seem like the symptoms fit better.

And Selective IgA Deficiency is usually hereditary.  It can have major, life-changing symptoms, minor annoying symptoms, or no symptoms whatsoever.  I have a sister who struggles with sinus trouble, a mother who has Rheumatoid Arthritis (which frequently goes along with--all right, this needs an abbreviation--Selective IgA Deficiency), and a father who used to get ear infections as an adult when he worked outside.  As well as one daughter who has just this year started having ear infections at eleven, and another who has had problems with her sinuses and lungs since birth.

And that one's sick today.  Everybody's had a cold here.  Knock on wood (not that I'm practicing some kind of superstitious paganism here, it's just a figure of speech), I've had a very minor version of it.  But then, it's never the cold that gets me, it's the opportunistic infections afterwards.  The weather here has been extremely mild for December, which has probably (hopefully) saved me from getting pneumonia this time.  I've been trying not to go outside when it's cold and/or windy.

But my daughter is sick.  She's missing school today.  I wonder when we'll have to take her to the ER. (Darn it, I wish I'd said 'if'.)  Maybe I should ask them to test her for IgA.  I'll bet they've never even heard of it.  They often tell us she just has a cold (I've blogged before about being blamed when the illness got out of control when I was the only one who realized how sick she was and couldn't get anybody else to listen).  I have four children and I'm not a worrywart about their health--at this point I'm more like, 'go lie down and I'll bring you a glass of something and a blanket, and let me know if you need anything else', and then I go on with my life--it's not as if I have nothing to keep me busy around here anyway.  (I know when I'm sick I generally wish everybody just would go away.)  But I generally do know when somebody's *really* sick.  I mean, come on, we've all been together a lot for over a decade now--how could I not know this?  And what this child has is different from what everybody else has.  She starts coughing this dry little cough that nothing but prednisone fixes, and even that only works somewhat.  Sounds just like her mother.

Well, not much else happening here.  All four girls went to the dentist for check-ups yesterday--no cavities at all. :)  I started reading a library book about Beethoven in the waiting room--sounds like my kind of guy.  Hung around in the woods a lot, went to parties and couldn't hear what was being said, got accused of being surly--and he had a hard time being taught the way other people thought he should be taught, too.  In his case, probably because he was so far ahead of them that he could have just taught himself.  I've started playing from a book of Beethoven music I have.  I also have a few other pieces in various books, and a complete collection of his sonatas, which last year formed the basis of a minor obsession for a month or two.  Not that I'm playing them really well, but that hasn't deter me at all.

I cleaned house a bit yesterday, too--tidied up the shelves of arts & craft supplies just a bit, took everything off the coat rack to see what's been outgrown.  Christmas is coming--I need to do some shopping, maybe a lot of it online, and continue to tidy up around here.

And I need to get to work this morning--it's 9:30 already.  Yes, I have all the morning chores done, wood stove's started, and I'm all dressed up and ready to go.  But I haven't even played the piano yet, and there's always more housework to do.  Bye!

Tuesday, December 4, 2012

Coincidence ?

It keeps happening to me lately.

I say something (like I did in my last post about rings around the moon), or I dream about something, and the next morning, there it is on facebook.  These two lovely pictures are from Aurora Borealis.

Somebody's trying to tell me something.  I just don't know who. (or what lol)

Anyway, it sure is pretty.

Sunday, December 2, 2012

:) Out With the Old, In With the New

Well, I'm still here.

One thing about living without a lot of other people around, you do have some control over your environment.  And I determined a long, long time ago to at least try to make my immediate environment someplace that I'd actually like to be.  If I'm going to live a lonely, isolated life punctuated by long bouts of debilitating illness, I'm going to at least make the most of it.

So I try to keep my house and yard reasonable clean.  It seems to be a losing battle for me to achieve anything approaching organization, but over the years I've improved somewhat.  I hang up Christmas lights and put up decorations.  No one will see them except my husband and children and me.  But it's important to me.  And I'm sure my children will remember it--I know I remember my mother's decorating.

I need the magic--colored lights and elves and flying reindeer.  Most of the people in my life seem to have outgrown the magic.  I find this to be depressingly bleak.  I need to go outside at night, and once in a while see a huge ring around the moon, or get up early in the morning and see frost covering every single blade of grass and pine needle, and nothing but fog all around me.  Other people tolerate this about me, if only because I won't give it up.

In the last few years I've watched my children grow up.  In some ways, it seems, they are now more mature than I am.  It's not that I have no self-discipline, or that I can't make good, sound decisions.  It's just that I have to have the magic.

Anyway, I clean from time to time, and I keep the kitchen stocked, and the library stocked.  I try to make my little kingdom as comfortable as possible. 

And then somebody online says something that temporarily crushes me.

So....I've decided to take control of my online kingdom as well.  It started with moving the blog.  Now I've started another facebook page.

When I thought about it, it's pathetic that I thought twice about signing up for George Takei on facebook.  The reason I almost didn't sign up for him is that he's (shhhh, looking around to make sure nobody is listening) gay.  And hear about it I did--from a couple of people, anyway.  Did I know he was gay? 

It's not really appropriate for a nice Christian girl (these people don't know about the Nook with Fifty Shades on my laptop) to 'like' (on facebook, on facebook) a gay guy.  Even if he is hysterically (isn't etymology fun?) funny.

No way would I have 'liked' or signed up for any interest groups pertaining to Wicca, or Shamanism, or Tao, or Kabbalah.  Even though I'm not really committed to any of these spiritual practices, just curious.  I'd even carefully considered at first whether I'd admit to having CVID, or prosopagnosia, or APD.

I've finally decided that it's not beneficial for me to wake up in the morning and see something that causes me pain (if I can help it), or rampant posts of intolerance.  Funny, it didn't seem to be a problem before.  Guess I was just used to being treated like crap and seeing other people get treated like crap. 

I could have given up facebook altogether, but I didn't want to.

So I moved.  I took a few people with me.  Took the kids, husband, a couple of friends I met on facebook that seem to be open-minded, and my sister.  I wish everybody else well.  If one or two of them miss me, I might invite them to come on over.  I'm sure some of them would wish me well if they knew.  Well, I'd like to think so, anyway. 

In spite of several times lately when I've wanted to wish illness on a few (and that episode last night when 'War of the Worlds' was on TV and I rooted for the machines), I've restrained myself from being vindictive.  There's a lot of ignorance in this world and we've all been caught up in it from time to time.

And now I've signed up for everything that I'd wanted to before, but was afraid to.  I've listed my religion as 'Eclecticism'.  It'll do for now.  Who knows, maybe it'll catch on.

It's a small thing--hardly incredibly risky.  The worst that could happen would be that somebody from my 'old life' would find me and get upset.  Fortunately, tying people to posts and lighting fires at their feet is no longer in vogue.

It's a small thing, but I've gotten a lot of what could perhaps be described as 'glee' out of it.

Saturday, December 1, 2012

I hate it when I run out of denial. :(

And the drama continues.  I honestly do not like it when my life resembles a soap opera.  All things considered, I'd rather win the lottery.

I've had yet another blood test, which has turned out to be normal.  These tests are showing that I do not have an immune deficiency (think 'boy in the bubble').  Only they used to show that I do, and nobody ever simply stops having an immune deficiency.  And if they did, I would assume they would actually stop getting sick.  Last winter was horrible (see any time from late November through spring).  This September, while they weather was being unseasonably warm, I developed a double ear and a double sinus infection.  It still seems to me like my immune system isn't doing what it's supposed to be doing.

My doctor is trying to figure out how to do a 'pneumonia titer'--a test to see if the pneumonia vaccine (to which I reacted horribly--the word 'frighteningly' wouldn't be too extreme) I got this year 'took'.  If I failed to develop antibodies, that's another piece of diagnostic evidence in favor of my having an immune deficiency.  But my doctor is just a gp, and he doesn't know what he's doing.  All he's got going for him is a tendency to believe that I'm telling the truth when I tell him something.

While that's going on, I am also trying to find a doctor (psychiatrist?  neurologist?) who will test me for autism.  So far, the two doctors to whom I've been referred are both no longer practicing.

I've gotten to the point where I've run out of denial.  I honestly tried to keep the denial going for as long as I possibly could.  And I did keep it going for an impressively long time.  But I can't do it any more.

I am autistic.

And I can't just be autistic and hide it and have a normal life.

After years and years of public school with no friends, jobs that last a few days, weeks, or (if I was lucky) months, churches full of people who remained strangers, friends who've disappeared from my life, I have to admit that it doesn't look as if one day I'm simply going to figure it all out and become popular.  Or even tolerated.

I have twenty-seven facebook friends now.  Basically my children, a couple of my children's friends, my husband, my sister, a sister-in-law who hardly speaks to me, a handful of cousins, and a few strangers with CVID.  That's it.

I've watched my kids get online and make friends.  My husband immediately started piling them up.  This is normal, which I am not.  It's normal to have a whole string of friends from your past--relatives, school buddies, work buddies, church buddies, neighbors, etc.  I have nobody except my immediate family--kids, husband, sister, parents.  That's it.  I have no past.

I really thought that if I put myself out there, and people got a chance to know me better, that maybe I'd have a few friends.  The last blog was also partially an attempt to do that.  But I have so many strikes against me--illness, poverty, a slight hearing problem, neurological problems that make it impossible for me to remember pictures of streets, or cars, or faces--which means that if I do run into anybody from my past, I don't recognize them, and/or don't hear them....I think my unreasonably high IQ is in some ways yet another liability.  I seem to have two options--to hang around with people whose IQs are far beneath mine, only to completely fail to fit in and become completely disinterested and bored anyway, or to hang around with people with IQs around my level, only to be considered retarded because I have no job, can't hear all of what's going on around me, and don't recognize anybody.  When you add on to all of this the cluelessness of an autistic person, well, statistics say I've accomplished something impressive in that I was able to find a man and reproduce--my odds of that were not good.  Driving a car is another accomplishment--a happy result of my stubborn refusal to accept defeat.  I've done reasonably well.  For an autistic person.  But expecting to make friends might be too much.

I won't go into details about the one facebook friendship that just ended for me.  Everything was fine, and then, out of the blue, suddenly it wasn't.  I think it might actually have been about what she said it was about--our (suddenly) conflicting religious beliefs.  Or maybe it was something else that, being autistically clueless, I'll never figure out.  It's hardly the first time this has happened.  I find myself wondering what it must be like to have so many friends that you can throw them out instead of just being grateful that somebody (almost anybody) would talk to you.

These people were also my husband's friends, and my children's friends.  My children don't have a lot of friends to begin with--they're just starting to make friends now that they're old enough to go out into circles of people outside of my tiny circle.  I'm glad they're getting out there finally.  I've worried about what effect my isolation will have on them.

I've been keeping busy lately.  I've been cleaning the house, putting up all the Christmas decorations (yes, even the Christian-themed ones), playing the piano--started another piece of music.  I'm not sure what it is yet.  It might be another sonata.  I get up in the morning, do chores, and keep busy all day.  This morning I cleaned the ashes out of the wood stove, hung the Christmas lights--as long as I keep busy, I won't get too depressed, right?  After all, we wouldn't want this blog to a a documentary of what it's like to sink into a serious depression.

I'll see my family for Christmas--sister and parents.  I know I'm lucky to have them--some people don't have anybody.  I'll see my husband's family, probably, but I won't enjoy it.  They don't want me there.

I won't be going anywhere else this Christmas season.