Monday, June 3, 2013

Banging My Head on the Wall

Maybe that's not a politically correct thing for an autistic person to say. ;)

Some weekends are just like that.  I'm sure everybody has them.

Then the church that my husband and children go to is sending the older kids on a mission trip next month.  Our two older children will be going.  I just found out that by next weekend they want $100 a kid.  Doesn't seem like much.  Except our bank account is running on empty.  So....every other week my father gives us $300 grocery money.  Guess we'll be living off my survival stash for the next couple of weeks.  It's a good thing I'm always prepared.  But it would be nice if the people at church had a clue about what it's like to be poor.  I don't really know why they should--nobody else does.

And then....a relative brought up my sense of direction.  Again.  The conversation went something like this....

"Blah blah blah." (Stuff about where something was at that I did not understand.)

"Uh-huh." (Code for "I'm pretending to understand even though we BOTH know damn well I don't.)

"Blah blah blah."


"You know, blah blah-blah blah blah blah-blah-blah."


"What.  Ever."

It's a great word, 'whatever'.

Anyway, the Wii now says that I'm 35.  I've improved in three weeks.  Now if I could only lose weight.  I'm thinking that I might be putting on muscle, though, and I'm fairly sure I've lost a bit around the waist.  I've been good about my diet--putting in all that hard work exercising is definitely not an incentive to over-eat.  So we'll see what happens.  And I've discovered another benefit to the Wii--it makes me stop.  I got up to level four on bicycling (virtual bicycling is way more fun than it ought to be), and I only had two more flags to find, but I'd been looking for an hour, and the Wii cut me off.  Told me to go take a break.  That was before dinner and it's almost bedtime now.  If it wasn't for the Wii, I'd probably still be pedaling.  Maybe I'd be unconscious by now.  I think I'm become (cough) addicted (cough), as daughter #3 would say.  Maybe I'll get addicted enough to actually lose weight.

I played through the entire John Thompson piano series this last week.  It was fun.  There's some really good music in there.  I think John Thompson is underrated as a composer.

I've also become addicted to 'Diamond Dash' on facebook, but that's just a passing thing.  I don't allow myself to play it until after dinner.  I may need a 12-step program.

I've also been playing Words With Friends.  I beat everybody.  Finally, a savior arrived in the person of my brother-in-law.  He managed to beat me.  By 11 points (she observed competitively).  He might beat me again this time.  My father reminded me today--I used to be horrible at Scrabble.  It's funny how my brain learns to do some things given enough time.  Sometimes I'll be way behind everybody, and then I'll just catch up out of the blue and suddenly I'm the best.  Weird, huh?

I am competitive.  I've lost lots and lots and lots of times.  My lopsided brain is quite used to failure.  But second-oldest has a high score on Wii hula hoops, and I had to try with all my will to beat it today.  I nearly had a heart attack.  It was literally several minutes before I could breath normally.  I can't get anywhere near her score.  It's her fault--she'd taunted me.  She's just mad because I beat the hell out of her at Diamond Dash.

Well, the girls are all outside camping in a tent tonight.  I think I'll go get ready for bed.  Good-night!

Sunday, May 19, 2013

Amish Peace

I exercised this morning while everybody was at church (and last night, when everybody went to dinner with my in-laws).  I behaved--I took breaks.

This afternoon my father took us all to see Star Trek:  Into Darkness.  It was really good.  The moral of the story--don't make Mr. Spock angry.  You wouldn't like him when he's angry.

I finished a book this week (I mentioned it on this blog a few days ago):  Amish Peace, by Suzanne Woods Fisher.  Even though I'm no longer practicing Christianity--well, I'm not really practicing anything in particular, so I may as well find wisdom among the Amish as anywhere else.  I guess most faiths have a little bit of wisdom.  (The only thing I'm not reading up on is atheism.  My sister liked what I said this morning, so I'll repeat it here--I can't really consider atheism, because nobody can point to a god-shaped hole in the universe somewhere and say, "He (She?  It?  They?) isn't there, so He doesn't exist".  Agnosticism makes a certain amount of sense to me some days.)

Anyway....I've often thought I'd like to be Amish, but only for a couple of weeks.  I'd like to take a horse and buggy ride.  I like colorful the colorful quilts.  I like the idea of living closer to nature (the Amish are good at that).  But I like the internet.  I like reading what I want to and listening to what I want to and playing the piano and wearing comfortable clothes.  I'm also not at all sure I'd like quilting and canning for the rest of my life.  To each her own.  But this book brought up some good points, after outlining the origins of the Amish culture.  For most of the book, Ms. Fisher talked about different aspects of being Amish that one could emulate, without having to actually be Amish.  Which fits in very well with my practice of "Eclecticism".  So here are the main facets of the "Amishness" (it should be a word) that Ms. Fisher considers worthy of trying to incorporate into our lives:

Simplicity.  The Amish don't believe in having a bigger house than they need, or more stuff than they need.  They also don't have to worry about interior decorating, or fashion.  This allows them to focus on what's important to them.  Our lives out here in the modern world are so complicated that it's hard to focus on anything for very long.

Time.  The Amish have a different view of time.  I've tried to resist the 'hurry-hurry-faster-faster' attitude that seems to be everywhere, but it's not easy.  It's not that I don't want to be productive.  But it's stressful.  There has been a lot of pressure on me to hurry over the years, maybe partly because sometimes I am slow--having crummy visual processing and memory sometimes does slow me down.  Sometimes being sick slows me down, too.  But I wonder why we all have to hurry so fast.

Community.  I have to wonder what it would be like to be surrounded by siblings and cousins and aunts and uncles.  The only thing that would disturb me would be the lack of independence.  I would love to have a community, but I'd hope it would be a tolerant one.  Our society does seem to focus more on competitiveness than community.  A lot of people are very isolated.  I've been sick alone, taken care of young children alone a lot of the time, or both.  I've gotten some help with the poverty that results from being disabled, but that burden has fallen on only a couple of people instead of the entire community.  I don't know what I'd do if I didn't have them.  And I've raised my children practically alone--they should have had more community.  I'm glad they have church.

Forgiveness.  This is a good one.  Nobody's perfect.  Anyway, the whole human race needs to grow up.  There is so much we don't know.  People are born with physical problems, or neurological problems, or they grow up in horrifically abusive families, or abject poverty, and then it's so easy for us to blame them for how they turn out.  And the judgmentalism (judgmentalness?) does seem to be contagious.  It brings peace to forgive others.  I think it was  Beth Moore who said something about failure to forgive a person being like having to carry them around with you everywhere you go.  It's a burden.  And it's not just others--I'm still working on forgiving myself.  I don't only want other people to be perfect, I would like to be perfect, too.

The Sovereignty of God.  How easy it is to fail to put spirituality anywhere on the to-do list on any given day.  I'm improving on this one, too. (At least I don't feel I'm a worse person than I was a few years ago--I'm heading in a direction I like, even if I'm not moving as fast as I want to.)  I've also worked at trying to accept that things are the way they are.  I don't control the universe.  Serenity prayer and all that. 

I like the lack of competitiveness among the Amish.  I don't have a problem with a bit of pride in a job well done, or a bit of competitiveness.  But we carry it too far.  Among the Amish, nobody has a bigger wedding, or a bigger buggy, or better clothes.  Everyone is equally valued.  I like the humility--the other side of forgiveness, perhaps.

Some things to aspire to.

Thursday, May 16, 2013

There. Will. Be. Breaks.

Well, last night everybody left the house, so I tried something new.  Nope, not having an affair, or carrying out some odd pagan ritual--nothing so interesting as that.  Maybe you should stop reading now and go find something interesting--the internet is a big place.

I got out our Wii Fit CD and the balance board.

I've never used it before--somebody's always home and watching television.  I entered my birth date and height and it weighed me.  Then there were some fitness tests--mostly balancing.  It told me my 'fitness' age is 51.  Not too bad.  The other Wii game, Wii Sport, told me I'm 43, so if you average them out you get my actual age.  And I have to brag--I got onto the top ten scores in several games, competing with my husband, who's in the National Guard, and four teenagers.  So even though I need to lose weight, I'm not totally lacking in physical fitness.  Not bad after many years of on-and-off-again serious illness.

And it was kind of fun--balance games, yoga, strength training, aerobics--and I finished up with a short run through a virtual park.  Wii Fit suggested a break a couple of times, but I only had a couple of hours before the family came back, and besides, breaks are for losers, right?  So after Wii Fit I boxed with Wii Sport.  I've been doing a bit of that lately.  The last opponent was so good that by the time I finally beat him, I could barely keep my arms up.  Wii Sport suggested a break, too, but I ignored that.  I am nothing if not disciplined.

Then my family came home, and I went to take the dogs outside one last time before bedtime.  Only my legs didn't seem to want to hold me up any more.  I don't know when I've been so totally exhausted, without being sick.  I was barely able to manage a few more chores before I climbed upstairs to bed, not quite crawling up the stairs.

So next time, There Will Be Breaks.

And today was yard work day.  My 'fitness' age last night may have been 51, but when I got out of bed this morning I think it was closer to seventy-something.  Fortunately I've pretty much completely recovered now.  Mowed the lawn, ran the weed trimmer (and it was in the eighties out there), used the hedge clippers, power washed a few things outside.  And I feel pretty good.

Sunday morning everybody will go to church.  And I will work out.  With breaks.

Tuesday, May 14, 2013

Hyperbole and a Half

I've discovered a new blog:

I love this blog.  It's hysterical.  Thought you ought to know.

Monday, May 13, 2013

We Are Here, We Are Here, We Are Heeere....

Hi!  I'm sitting here watching 'The Voice' on television.  'The Voice' is a absolutely mandatory if you have four teenage girls in the house.  It's mildly entertaining, and I really like Maroon 5's music, but it's very rare that I can sit through anything on television without having something else to do, like posting to my blog, or hanging out on facebook.

I've been thinking about facebook today.  I've been looking at my relationships with people a bit differently lately.  After being exposed to Ewa Schwarz....

....I've realized that most of the time (if not every freakin' minute) we're not actually relating to people, but to what we think of those other people.  In a way we're relating to ourselves.

Imagine we're both sitting in the same room.  I sit here looking at you.  I see what you're doing.  I see your face and body.  If  you speak, I hear your speech.  But I assign all sorts of meanings to what you do and say, based on assumptions from previous relationships with other people, and on what kinds of things you've done in the past, and on wishful thinking, and my own deepest fears, and how I would behave in a similar situation if I were you.  I don't really know what you mean.  You do your best (hopefully) to communicate your meaning to me.  You use body language, and facial expression, some of it even intentionally.  You use words and volume and pitch.  And I try to figure out what you mean.

But I don't really know.

And it's not that I don't know because I'm autistic.  Certainly, that makes it more difficult.  But NTs (neurotypicals--'normal' people) don't really know what the other person in the room means, either.

I've started to imagine myself trapped in a big, dark sphere.  All over the inside wall of the sphere are reflections of all of the people I've met.  I don't see the real people, just their reflections.  Even when someone's not in the room with me, I can still see a shadow of their reflection.

It's a crowded sphere.  My parents, sister, husband, children, pets, in-laws, people from church--even shadows of fictional characters and people on television I've never met--even Frederic Chopin's shadow is there, sitting in a drawing room there on the wall of my sphere, or walking the streets of Paris as a youth.

I can't get out.  They can't get in.  Maybe they're each trapped in a big, dark sphere of their own.  I don't know where Chopin is now.

I think we're biologically programmed to be around other people.  I think our very bodies are unhappy not being touched, not being surrounded by people.  For an autistic person like myself, too much touch and too many people/hours per week is a bad thing, but there's still such a thing as too little, and many autistic people get way too little interaction with fellow humans.

Facebook partly fills the void, but not completely.  And that's what I've been thinking about today.

Because even with facebook, I'm still off in another place, interacting with the reflections of other people.  We exchange ideas.  We each try to figure out what the other person means.  Isn't this just as valid a relationship as an in-person relationship?

I have thirty-one autistic friends now.  I can almost imagine each of us sitting in our separate place, trying to communicate with each other, just as people in the same room would.  In some ways it's a bit easier--because autistic people are more likely to say what they mean and mean what they say.  But we're all still guessing.  Are these relationships less valid than face-to-face ones?

The only difference I can see is that with these people, there's no real penalty for 'ditching' any of them.  If I were to stop talking to my family, people would disapprove.  If I filed for divorce, some people would disapprove.  I'm forced to take care of my children, not that I wouldn't even if the five of us were shipwrecked on an island somewhere.  All of these people are also valuable to me in an extrinsic way, providing me with, well, money mostly (which provides food and shelter and heat and all the other things I've become used to having).  They provide me with encouragement and intellectual stimulation, too, but facebook friends can do that, too.  Not that I'd replace my sister or children with a facebook friend.  I'm lucky to have a few people in my life that I actually love, beyond just being happy that they're useful.

I suppose that if I were to treat a few autistic people online with blatant disrespect, word would get out and I could actually be ostracized.  There are dozens of inter-related autism support groups, and word would get out.  I'm sure I could get kicked out of my asthma support group, too, if I behaved in a heinous manner.  But, I'd still have the house and three squares a day.  I don't need those people.

In a way, not having to depend on them frees me to be myself.  Being financially dependent on other people sucks the life right out of relationships.  It's harder to risk making the other person unhappy by revealing what you really mean.  When I moved to a new facebook page, and became 'Erika', I changed into another person.  That person is even starting to spill over into my flesh-and-blood life in some ways.  The thought crossed my mind recently that I would never have wanted to change my name before.  And my mother gave me that name--it would have seemed, I don't know, ungrateful.  But I don't think my sister would really care all that much.  I've never really cared for my name.  And I like this new person better, even though she's really still me.

In a way, I don't even see the real me sometimes, but a reflection of that as well.

On facebook I can be myself.  The shadows that my facebook friends see are probably in some ways more real than the reflections that some of the people close by are seeing on the walls of their big, dark spheres.

I miss my mother.  I can't see her reflection any more.  Sometimes I'd swear she's still here.  Her shadow is always going to be on my 'wall'.  Other times I feel trapped--I can't see her reflection any more, and I can't see where she's gone.

Sunday, May 12, 2013

What makes you think that your problems are Permanent?

I've decided that Mother's Day sucks.

I am now adding it to other 'sucky' holidays, like Valentine's Day.  When you grow up without ever going to a dance or going out on a date, Valentine's Day isn't much fun.

Halloween, now that's a holiday I can get into.  As if gobs of candy weren't reason enough, you can play dress-up and decorate and have an extremely dark sense of humor and still be socially acceptable.

But Mother's Day....

When my mother was in the hospital, I kept thinking it would be nice to have still had my old church to go to.  There was a pastor's wife, and a dozen older women, who I kind of missed more than I usually do.  It's dawned on me today--I don't have a grandmother living--my mother's mother passed away just weeks before she did, and my other grandmother passed when I was twelve.  I don't even have a mother-in-law--she died eight years ago.  In fact, I don't have any women in my life at all except for my sister and my children, who are almost women.

I try not to waste time feeling sorry for myself.  I've spent most of the day just pretending Mother's Day doesn't really exist.

I think denial isn't always such a bad thing.

Here's something I saw on facebook that I liked today:

Kind of my new philosophy of life--focusing on....what?  I don't know.  But I only have a few decades left on this planet.  Whether I go to Heaven  (where there will presumably be gobs of candy every day), or get reincarnated (maybe I can avoid being a gnat in my next life if I manage not to wallow in self-pity more often than I can help), or something else entirely--I'm starting to think that this isn't all there is, and that it's not (quite) the end of the world if I can't get a job, or make my marriage work, or find a church where I'm acceptable.  Hopefully I already have people (and pets) waiting for me, wherever I'm going.

It doesn't seem to bother most people that they are going to lose everything.  Every person they care about, every pet, every possession, every place--they're either going to lose them, or be lost themselves, to death, sooner or later.  If they're lucky, they might get an entire century on Planet Earth before the end.


For a majority of the last forty-seven years I've been in a place similar to the place I'm in now--alone, almost housebound, unemployed (or failing in school, or both).  I am now working on accepting that this is the way my life is going to be.  Hopefully I'll be able to stay in this house--being able to go out in nature comforts me.  But there's no point in worrying about that.  More useful denial.  I've given up on getting government assistance--maybe I'll try again some other day when the desperation gets a little worse and we need the money a little more than usual.  But right now applying again seems downright silly.  And besides, I am REALLY tired of trying to prove that I'm trying, instead of being a malingerer.

I'm making the best out of my situation.  I've been exercising more--I'd lost fifteen pounds (yay!), and then stopped.  No more pounds would budge.  And then I read in a book about the Amish ("Amish Peace" by Suzanne Woods Fisher--more on that in another blog post, perhaps) that they eat mashed potatoes and doughnuts, but aren't usually overweight, because....well, this is probably the reason why we have so much obesity in the United States these days....they work hard physically.  Not watching TV several hours a day or sitting behind a desk, but planting and plowing and canning and taking care of animals and walking everywhere.

Maybe people are meant to eat all the fat and sugar they can get their hands on.

So when everybody leaves the house, I get on the Wii.  I mean, I still had a salad with dinner, and refrained from having seconds, or opening that bag of chips in the cupboard.  But I might really need to be more active.  Pedaling on the exercise bike while I talk to my sister is apparently not enough.  We have several physical fitness games that I never play because somebody's always watching TV or playing the Wii, and when everybody leaves I go relax in a corner somewhere.  I've given that up for now.  I've also started exercising a little more when I can--lifting a few weights while I read the book about the Amish, doing a few leg lifts while I'm online, whatever I can think of.

I keep going through the clutter in the house, and just keep busy doing chores and homeschooling and playing that piano.  It's not easy sometimes, because I think nobody will ever hear my music.  But the music is good for me--it's good for my mood, and it's a bit of exercise for my hands and arms.  It even seems to do my back a bit of good.  Every day I click to donate. 

I spend some time on facebook--talking to other autistic people.  Autism support groups on facebook are wonderful for acquiring lots of friends--I think you could fairly reliably diagnose autism based on how many (non-autistic) friends a person has on facebook.  I have seventeen--four children, a husband, a sister, four relatives, a fan fiction author, and six people from illness support groups--I occasionally talk to sick people, too.  It disturbs me--people who I know for a fact are severely troubled and/or just not very nice get on facebook and within a month have dozens of friends.  I think that maybe having dozens of facebook-only friends might be best for me--when one dumps me, I can just go on with my life.  The way normal people do when one of their dozens of friends dumps them.  Having only one friend and then getting dumped is not healthy or fun.  And autistic facebook friends laugh when you tell them that May 8 of 2013 is a Fibonacci number.

I think facebook-only friends are also better for me because they won't ever expect me to be able to drive out somewhere to meet them.  I think sometimes I might be alienating people by making them think I don't want to see them, when the truth is that I simply have no way to get to their house, or the park, or a restaurant.  Even though the last couple of times I've tried to explain.  It's also nice not to be failing to recognize people and missing their facial expressions and struggling to hear what it is that they're saying.  But it doesn't quite kill the loneliness.

Being out in nature kind of does.  Being stuck in a room all day would definitely make things worse.  Especially if there weren't a piano in the room.

Wednesday, May 1, 2013

And the Lawyer has Dumped Me

I went to see the lawyer today.  She was very nice.  She very nicely let me know that she's done with my case.  There just isn't enough evidence that there's enough wrong with me to warrant disability.  I believe she actually felt sorry for me.  She suggested a few things....working from home, for example.  She didn't know how many times I've already looked into that.

You know, if I were actually disabled, there are agencies that would help me find a job.

Anyway, there's a review of the decision, all I have to do is fill out a piece of paper and send it certified mail.  The lawyer said I could also fax it.  I didn't feel like telling her I can't get to anywhere that faxes.  Just didn't feel like explaining it again.  I could also take it to the Social Security office in person.  Can't find that either.  But I filled out the paper and I'll take it to the post office.  It's not as if I have anything to lose.

My husband may have jury duty.  I said something to a relative about being glad it wasn't me, and the response was, why would I be glad, I've been to the courthouse before.

I'm tired of explaining.  I'm tired of trying to make people believe me.  I'm tired of educating people.  Maybe I wouldn't mind so much if more than 1% of them actually learned something.

I'm just going to live to make me happy now.  I'll try to be a good parent, and even a good pet owner.  I care about my household.  But I'm done trying to make people believe me, or make somebody hire me, or convince somebody that they really should like me because I'm a decent human being.

I'm just going to go on pretending everything is fine.

Some days my biggest enemy is loneliness.  Other days it's boredom.  At least the weather is nice here--sunny weather and open windows generally perk me up. 

I think I might be happier not trying to change this situation than beating my head against that wall over and over and over and over and.....

It's fifteen years until early retirement--if I live long enough I'll collect that Social Security eventually.   If my husband were to leave before that, well, I could just go live with my father, or with my sister.  In the city.  I don't at all relish the thought of being stuck indoors all the time.  I spent some of my young adulthood that way, in between failed employment attempts.  But there just isn't any point in thinking about it.

I'm going to have to be pickier about what I think about.

Something's come up a couple of times now, and I've wondered if God (whoever she/he/it is) is trying to tell me something.  It's been about how people in Nazi concentration camps found happiness even in their circumstances.  If they can do it, I ought to be able to.  Maybe God's been telling me to stop feeling sorry for myself.

Monday, April 15, 2013

The Social Security Decision

And the results are (finally) in--I've been denied.  The social security hearing seemed to go well, but the judge found me only 'partly' credible.

Part of the problem was that I was unable to get medical care for a few years--living in poverty with no insurance means you only go in if it's a dire emergency.  Respiratory distress (in the literal, medical sense) isn't sufficient.  Another part of the problem is the lack of official diagnosis for the visual memory problem I have.  Being unable to recognize my own family members isn't sufficient for that, either.  I have to be able to prove it, and I can't.

And then there's the opinion about my two sick visits to doctors this last winter.

The first one was for a double sinus infection and a double ear infection.  I had a fever.  The doctor looked in my ears.  She took my word for it about the sinuses after that.

The second one was for the flu.  I had a fever.  My blood pressure (normally normal) was almost 200.  My kid had the flu, too, and we both went to the ER together, driven there by my husband.  And then I spent the next month recuperating--three weeks after the worst part of the flu was over, I was still not breathing well enough to walk anywhere--I had to be dropped off at the door when I visited my mother in the ICU.  I couldn't go shopping.  I probably spent two weeks including the flu just sitting in that damn Chair.

The judge wrote in her decision that I had two sick visits for the 'common cold'.

It makes me sound like a horrible hypochondriac.

But everything is fine, right?

Sunday, April 14, 2013

Everything is Fine.

Well, I just keep slogging along.  My husband left recently for a two-week stint in El Salvador with the National Guard.  I've made a bit of a party out of it--Friday the girls and I went shopping, and we had a little bit of fun.  I figured it would be inadvisable to eat  doughnuts, Oreos, and frozen foods for two weeks straight, but we got a few fun things.  So Friday night we had frozen pizza and little bags of chips, and yesterday morning I made refrigerator-roll cinnamon rolls.  We skipped school Saturday.  However, I am immovable--we will be doing school for the next two weeks starting Monday, in spite of any begging and/or pleading from the girls.  On guard weekends, we don't do school.  But two weeks is too long.

We were as far ahead on attendance at Christmas as we ever have been, but after Christmas break, and that horrible flu everybody got, and the funeral, and my sister coming to visit last week (always a good thing)....well, that's life for you.

I've been trying to figure out how to get my two older girls to church this morning and their youth group tonight.  But after driving into town, there isn't anyplace to go.  I'm lucky right now to have enough cash to get dinner for myself and the twins if need be, but after's kind of jarring to realize that there isn't anyplace I can drive to that's open on a Sunday.  My old standby, the library, is closed.

When my husband has to take the girls somewhere, he's got dozens of places he can go.  He can drive all sorts of places that I can't.  For me, the highway through the town where the church is located is the town.  Everywhere else is off-limits.  And the highway consists of fast food places and gas stations and stores.  No place to hang out for a couple of hours.  I don't really want to sit with the twins in a parking lot somewhere.

And my husband has dozens of friends to stop and visit.  I have none.  Not a single one.  Of course, if I did, I wouldn't be able to find them anyway.  But still, it's jarring to realize that if something were to happen to our plumbing, my only options would be to call my father and ask for money to hire a plumber, or call some near-stranger who happens to live nearby and explain the situation.  If the car were to break down, we might be stranded here for two weeks.  Good thing we went shopping.

This life has certainly taught me to be prepared, and to think in terms of independence.  I'm on my own here.

It's tough trying to make people understand why I can't drive places, or why I can't do the simplest of home repairs.  A couple of weeks ago my sister had what might be an excellent suggestion--dark glasses.  If people thought I were visually impaired, that might solve a lot of problems.  They wouldn't expect me to recognize them.  They wouldn't expect me to drive.  They might understand why I have trouble fixing things.

I've also thought about claiming to have had a stroke.  People are more familiar with strokes.  "Since the stroke, I don't drive much," is understandable.

So here I am, trying to have a bit of a party with our new internet service.  Finally, finally we've gotten rid of Verizon's $140 a month plan with the strict gigabyte limit and on-again-off-again service.  We now have DSL (from Frontier), and, for the first time, we can get streaming video from Netflix.  Add frozen pizza, and instant party.

I am tired of trying to make the best of things.  As in, "Well, you can't go to church or youth meeting, but look, nachos for dinner tonight!  Won't that be fun!"  It's a better attitude on my part, I suppose, than wallowing in self-pity all day long.

I've been fighting off a bit of depression lately.  Only for the last third of a century or so.  I get tired of trying to make the best of things and pretend that there's actually any expectation that my life is ever going to change.  Like, maybe some day I'll get a job, or make new friends.

I ran into an old friend who dumped me unexpectedly a while back, at the grocery store Friday.  We both smiled.  It's great to see you!  Everything is fine, right?  She seemed surprised to see me--yep, I'm still alive, still have to buy groceries.

I read something in the news today about a girl born with a severe facial disfigurement--wait, I'll go find it, don't go away....

Here it is:

She seems to have a wonderful attitude.  But she may never get married and have children.  And some of the things she said sounded just like me.  She dealt with constant name-calling.  "By the time she reached high school, she had learned there would be no friends, parties or dates...."

It's occurred to me that if I'm so messed up neurologically that I can't have any friends, can't work, can't volunteer or go to church, if all I can do is stay home, that even without the illness I don't see why people don't consider me disabled.  I don't think most people know me well enough to see what's happening here.  It's as if even the disability organizations don't find me acceptable.

And now that my husband has left for El Salvador, we're fully expecting the girls' medicaid to be cancelled.

I'm not in a great place as far as my fellow human beings are concerned, and I don't know how to fix that.  I'm thinking that if I simply expected people to accept me the way I am after all this time, it might be a symptom of mental illness on my part.

Somebody was nice to me on facebook this morning, and the first reaction I had was anger.  I don't want you to try to be my friend.  Acquaintances are fine.  They can come and go, I can read their posts and pretend to have some kind of a social life, and pretend that everything is fine.  But I certainly don't want to get any closer than that.

I wouldn't get married again if Gerard Butler himself showed up in my doorway with flowers and chocolates.  I wouldn't do that to anybody else.  My husband is married to somebody that he can't take anywhere.  I contribute no income.  His friends won't talk to me, and almost all of his family.  Sometimes I can't even do housework.  It's as if I died and he's a widower.  I don't get disability or welfare.  If he left, I'd have to move back in with my family.

It wasn't supposed to be like this.

Yesterday we made a big batch of chili and watched more movies.  I paid the electric bill.  Today I got in a shower before the girls woke up.  This is my life now.  In some ways it's good--I have lots of time on my hands, which a lot of people don't have.  It's cozy in the house while it's been cold and clammy and dark outside this week.

So I'll just keep pretending everything is fine.

Thursday, March 28, 2013

Give it up, you'll never be able to get a decent job, there is no place for you in our society, it's hopeless

Hi all (by all I mean, like, next to nobody).

This started out as an email and developed into a blog post.  I was reading an article my sister sent me.  And here's the article:

It was a good article--except for the part where the author said that lots of people with asthma work.  I spent a month having an asthma attack this winter, during which time I was definitely unable to work.  For the first couple of weeks I would have been unable to even get myself ready to go to work, and for the next couple of weeks I still wouldn't have been able to walk from my car to my hypothetical job.  I'm happy for people who can take a couple of puffs of an inhaler and go on with their lives.

But I try not to obsess over things like that.

I think the author, Mr. Joffe-Walt, has hit, in a tangential sort of way, on part of the reason for our society's economic problem.

Our standards for being an employable have gone way up over the last fifty years.

It used to be easier to get a job.  If you were Mr. Joe Farmer and you wanted to provide for your family, common knowledge was all you needed.  Most people knew enough about animal husbandry and planting a crop and food preservation to get the job done.  Anything you didn't know, somebody around you probably did.  You didn't need a degree, and you didn't have to fill out an application.  And if you wanted to start a career as a blacksmith, for example, you might be able to get an apprenticeship.

You didn't even have to know how to read.

It's different now.

It's partly an intelligence issue.  And we as a society are completely unwilling to address this.  Half of our population has IQs under 100.  Some of us can't read and write, or can't read and write well.  And for some of us, no amount of education is going to change that.  And we need to find a place for those of us who, through no fault of their own, are not going to succeed in the workforce as it is now.

A single person who wants to make enough money to have a decent life--an apartment, a car, utilities, maybe some decent clothes and furniture and an occasional meal out or a movie--is going to have to get a college education (unless they get very lucky).  Even an individual who belongs to a couple who, between the two of them, want to make enough money to survive, is going to have to be able to fill out a job application, and is probably going to have to be able to type up a resume, and some of us just can't do it.

(And don't get me started on the paperwork in our society right now, in every aspect of life, not just job-hunting.)

Farming is a good example.  It isn't what it used to be.  You have to have a big tractor, and keep up with the EPA regulations, and do a lot of paperwork.  It's not just the back-breaking labor of digging in the dirt any more.  Manufacturing jobs are paying a lot less than they used to, and requiring a resume or job experience to begin with.  Almost any decent job requires education and previous work experience.

If you have an IQ of 110, you can probably do reasonably well in school, and go to college, and enter the work force having a little job experience, and you might make it.  Your  parents probably made it, because there's a (dare I say it?) strong hereditary component to IQ.  So you have their shoulders to stand on.

If your IQ is 90, well....

So there are a whole lot of people out there who would be happy to work if only they qualified, but they have no hope of doing so.

And then, in this dismal economy, employers don't have to be the nicest people.  Let's face it, it's always been this way to some extent.  If you're making $100,000 a year, your employer is statistically likely to be a lot nicer.  People making $10,000 a year often get treated like dirt.  Having had many different jobs over the years, I can attest to this personally.  There are two very different worlds out there, one world where you wear nice clothes and eat out for lunch and get treated with respect, and another world where people are a lot less educated and polite and where you'd better learn your place very quickly.  You shut up, keep your head down, and do as you're told.

Add to that the proliferation of two-employee families with children (not that I want to pass a law against that (shudder)), and you have another problem.  An employer who insists you can only accrue sick days at one day a month (and vacation days might be a thing of the past).  Once you have children, somebody has to take care of them when they're sick, take them to appointments, etc.  Maybe you don't make any appointments you don't have to.  And heaven help you if you get sick.  A bad case of the flu that takes you out for a week or two may very well cost you your quite-undesirable-but-very-necessary-minimum-wage-without-benefits job.  And good luck getting another one after you've got that blot on your record.  And these people are not generally understanding if you have to leave work at five to go to a night class....

And if I'm right it's just going to get worse.  Life is not showing any signs of getting less complicated.

Now if only I knew how to fix this....

Saturday, March 23, 2013

I'm back.

Hi.  Sorry I haven't posted lately.

A few days after my last post, my mother passed away.

And I simply haven't wanted to talk about it.  Then I found myself having my usual monthly weekend off (my husband has Guard duty), and for some reason I read a few of my old posts and decided to come back.

I've seriously gotten tired of posting about being sick and filling out paperwork, but I saw that I'd posted a lot of other 'stuff', and a lot that I would like to preserve, if only for my own children or grandchildren some day.  It's also been a good record of my medical problems.

It was a good funeral, if a funeral can be said to be good.  Everything went well.  I got to meet some people I hadn't seen in many years.  My sister did an excellent job of covering for me--I'd been worried about failing to recognize people I was supposed to recognize. (I was kind of dreading it--having to try to function around a bunch of people I'm supposed to know and offending half of them.)  She was great at, "Oh, hi Jane!"  I spent a lot of time near her.

It was actually the most socialization I've had in a long time.

The day my mother died was the worst day of my life so far.  At least I was healthy.  It doesn't help to have to worry about being sick, or recognizing people, or finding the funeral home, while you're dealing with something like this.  And me being more distractable than usual is not a pretty picture.  It takes a fair amount of concentration to be me.  One 'good' thing about having just experienced a death in the family--if you do anything stupid, people just assume you've been overcome with grief and forgive you unconditionally.

And our tax return came just a couple of days before.  It's sad, but I'd been a little worried that none of us had appropriate clothing to wear for a funeral, and that we'd have to ask somebody to give us money so we could buy some.  Not to mention money for gas to drive back and forth to town several times.

It's amazing how having a little money in the bank can make life a little easier to cope with.

And I got to meet my mother's sister, who I haven't met since I was seventeen--thirty years ago.  We really hit it off.  And I learned something--she has what she calls an 'all-faiths' altar at her house.  Somewhat like my (somewhat) jokingly labeled practice of 'Eclecticism' these days.  We had a wonderful time getting to know each other.  She lives far away.  She's just spent the last several years taking care of my grandmother, who recently passed away.

I am now considering an 'all-faiths' altar.

I have to mention the morning after the funeral.  My aunt, my sister and I, and my four daughters and my sister's daughter were at my father's house.  The men had gone to get some things from the funeral home.  It was time to go through my mother's jewelry box.  So my sister set everything out, and we took turns choosing pieces.  My aunt had wanted one piece for her 'altar' (which had prompted me to question her later about her religious practices).  After a few turns, we also let the granddaughters start taking turns.  When it was all gone, my sister actually offered me the jewelry box.  She's going to get it repaired and restored.  I think the main reason she did that was because I still remembered the song it used to play many years ago.  I'm not actually sure that's such an incredible feat--any more than recognizing a cousin you haven't seen in twenty years.  I've been trying to find out what song it was for a while now, with no luck.

It was very much like a second funeral, a religious experience.  People were impressed that my sister and I got along so well.  Really, getting along with her isn't any great accomplishment--it's easy.

I've been talking to my sister and father every day since my mother was in the hospital.  I used to talk to my mother every day.  When you don't have very many people in your life, those few you do have become so very important.  I'm lucky that my immediate family is made up of decent, kind-hearted people.  Everybody isn't that fortunate.

Let's see--I've also been to my Social Security hearing.  It went pretty well.  The lawyer hadn't really expected it to, but the judge did seem to be impressed.  I think I might have somehow managed to come across as credible.  Must have been because I was telling the truth.  Social Security has lost all my records concerning why I was booted off in 2006, which looked kind of funny, too.

Anyway, the judge did treat me with respect.  She did ask me several questions repeatedly, and I'm fairly sure she was trying to 'trip me up'.  Of course, it's easy to keep your story straight when you're telling the truth.  It was as if she was trying to get me to answer differently at one point, and I almost got frustrated, as in, 'no, I told you it was this way.'  I've always admired people who can communicate so well.  She would have been a formidable person to argue with.

The vocational rehabilitation specialist was asked by the judge what kind of jobs I could do, and how many days I could miss.  She seemed to think I would miss too many days if I were working.  I'll have to try not to get my hopes up--I've already referred to this as 'a dress rehearsal for the next hearing'.

It would have been more difficult for me to talk about everything that is 'wrong' with me even a few years ago.  It's still unnerving, being in front of a judge and a court reporter and a vocational rehabilitation specialist.  But I've really been developing an attitude lately about having to apologize for why I am the way I am.  I'm getting to be a lot more likely to declare that I won't attempt to do something that I know is going to be extremely difficult.  I insist that I'm not going to improve any more than I have--and at forty-seven it does indeed seem ridiculous to expect much improvement when I've been trying for so long.  Maybe if I had expert guidance I could improve some.

And, of course, I'd be happy to stop getting sick if I could.  In fact, right now I'm still trying to decide whether or not I'll develop an ear infection (in my left ear as usual) from running errands the other day when it was windy.  Maybe I should root for another infection--the Social Security people would like that.  Anyway, I'm also getting to be a lot more likely to insist that I need to rest, or slow down, when I'm sick.

When I was reading old blog posts yesterday, I came across one from January of this year, where I wrote about coming down with the flu and going to my parents' house, going shopping at Wal-Mart, going out to eat, then driving home (in terrible weather), hauling wood, and then the next day hauling more wood and taking care of all the pets (in case I ended up in the hospital), and then going to the emergency room.  I have to ask myself--am I nuts?  Really?  I had a temp, and this horrible flu, but I just drank four Mountain Dews and kept right on going.  At least until I got back from the ER, when I finally collapsed.

And some people think I'm being lazy when I say I can't go on any more?

And (subject change warning) I was talking to my sister today and remembered an incident that I think helped my husband to understand why I'm struggling with so many neurological issues.

My husband was showing me how to run a new push mower.  He was telling me about the red button on the left of the mower that I was to push several times to prime the engine.  And then he stopped.  And asked me if I was going to look at what he was showing me.  And I said no.  I was concentrating on remembering what he was telling me.  There was no point trying to remember the picture.

Nothing wrong with my memory--I still remember where the button was.  Just don't remember what the mower looked like.  Or my husband.

Well, that's it for now.  We're expecting 4-8 inches of snow tomorrow.  I'll try to blog sooner next time!

Thursday, February 7, 2013

The Cleveland Clinic Trip

Well, my mother is doing a little bit better.  We've had some ups and downs (and I'm sure there are more to come), but today her color is better and she was opening her eyes and looking at people better than she had been before.

I was happy to be able to walk up and down a few stairs in the hospital.  I'm doing pretty well.  I'm going to try to exercise for a few minutes at a time tomorrow.

I've been pretty busy--Cleveland Clinic Tuesday (more on that in a minute), all kinds of shopping yesterday (our tax refund came in--time to get the girls a couple of articles of clothing or a pair of shoes, buy a few things for the house, get the kitchen stocked up--go to the dentist, get the brakes tuned up on the van, etc.).  Today we went up the the hospital to visit Mom and to the library.  Meanwhile I've been trying to keep the housework up in between going places.  I've been a bit tired lately--maybe it's just that I'm still recovering from the flu.

The Cleveland Clinic was good--my husband came along to play his ongoing role as the six-foot-two bobble head doll.  I say I'm sick and he nods his head up and down.  While with my autism and lack of 'normal' expression, I don't think I come across as believable, my husband does.  He has credibility.  And I think it helps just to have another person agreeing that I'm sick.  Maybe it even helps that he's male.  Women do get labeled as hypochondriacs more often than men.

So the doctor believed that it's not allergies, and seemed to take me quite seriously.  I had a couple of breathing tests, some subcutaneous tests on my arm, a cat scan, and three vials of blood taken.  I'm even getting tested to see if the pneumonia vaccine I had a few months ago 'took'.

I almost laughed out loud when the doctor turned to me and informed me, "Your asthma is poorly controlled."  I managed to get by with a, "Yes, I know."  But he really seemed like a good guy.  And he knows more about what's wrong with me than I do--a pleasant change of pace for me.  He had a definite reaction to my former specialist having said I was all better.  Most doctors don't even know how ridiculous that statement was.  But this doctor did say that he can basically 'cure' me, or at least bring the symptoms under control.  I'm sorry, but I've heard it before.  With each doctor.  He gave me a new inhaler.  It's this year's new inhaler, so I haven't tried it yet.  But maybe I can at least get an accurate diagnosis, and maybe, just maybe, I can get at least a little bit better control of the asthma.  As for the immune deficiency, I don't think Tricare even covers the IVIG treatments.  That is, if what I have is CVID and not Selective IgA, or something else entirely, or nothing at all.

And I got a card from one of the people I bitched and whined about in my last post.  I sent a short email back.  I'm just barely stupid enough to think it will do any good.  I suppose it's best not to burn bridges, although perhaps some bridges should be burned.  Burned, blown up, and the wreckage hacked to bits.

Tomorrow we'll have the second day of homeschooling we've had this week.  It's been a bad year for attendance so far, but we've been so good in general that I don't feel too badly about it.  One of my homeschooling philosophies is that my children should learn what's really important, and visiting my mother is really important.  And getting me on Social Security is really important, too--someday it just might keep a roof over my children's heads.  Not to mention taking care of my health might be a good idea.  And if it is IgA deficiency, any or all of my children could have it.  You can be completely asymptomatic and have this.  You can also pass it on to your children.  One of my girls has had several serious illnesses and severe asthma attacks over the years.  Even my sister and/or niece could have it.

And then this weekend my husband has guard.  By then I'm probably going to feel like I can use a bit of a vacation.

Friday, February 1, 2013

I want to retire to an island x--(

Well, we have some almost hopeful news about my mother.  She's been opening her eyes and looking at people.  When I took my children up to the hospital to visit this afternoon, she looked at us, too.  She looks terrible.  And she's still on a feeding tube, and dialysis three times a week, and IV antibiotics.  They're starting to talk about physical therapy, and about whether or not she'll be able to go home with my father (who can take care of her if she can be cared for at home--he's been doing it for a long time now) or go to a nursing home.  She's not out of the woods yet, but there has been some improvement.

Mom is in an acute long-term care facility now, and it's in a location I'm quite familiar with, in another hospital.  They even have free valet parking, which is really, really nice for somebody who can't walk more than a few car lengths in the cold without having an asthma attack.  And when my father asked if I knew where the elevators were, I had the perfect excuse--I'd never been through the hospital's front door before.  I always go in through the emergency room.

I get a little bit better every day.  I can't be outside, or exercise yet, but I'm more comfortable now--my chest isn't as tight, I don't cough as much, or breath as hard.

I had a crabby discussion after we came home from the hospital with my general practitioner's office staff.  They hadn't wanted to send my medical records to the Cleveland Clinic.  I'd finally talked them into it, and today (wisely, if I do say myself) I checked with the Cleveland Clinic to see if my records had been received.  Guess what.  They hadn't.  But not only had the records not been received--my GP's office staff had never heard of such a request.  And when I told them I wanted records for CVID and asthma, the response was, 'so you want the records for asthma'.  They don't know what CVID is (and why on Earth would I want to go to Ohio to see a doctor whose staff may have actually heard of what's wrong with me?).  They couldn't understand why I'd want to go to the Cleveland Clinic when my GP hadn't recommended it.  Not that he'd been against it when I'd spoken to him after making the appointment.  He's always been supportive.  Otherwise his staff would have chased me away by now.

And then....

I've given some thought to posting about this on the blog.  I won't be naming any names or going into a lot of detail.  At least, I don't think I will.  Not today, anyway.

I'm very fortunate to have the family I have.  They're not perfect people, but they're about as perfect as any others I'm  likely to find.   And they're not abusive--not physically, and not emotionally, either.  They're my favorite people. :)

However, there are other people in my life who aren't so nice.  One of them is actually quite physically abusive, although I haven't been a victim.  I've been threatened, intimidated, stalked, and talked about behind my back, but not assaulted.  The others have contented themselves with simply treating me like dirt and refusing to speak to me.  And, wouldn't you know, they picked this time to rear their ugly heads. 

They don't know that I've recently given up Christianity.  At least one of them would get extremely upset about it--I'd bet all the cash in my purse.  I'm refraining from mentioning it.  At least one knows about my friend 'dumping' me two months ago.  I'm not certain they know how sick I've been this month.  They do know about my mother.

These are people I've basically cut out of my life as much as possible, mostly because I've gotten used, over the years, to being in possession of what little sanity I have, and I don't have any desire to part with any more of it.  Over the last couple of years I've seen them rarely, and not spoken to them by phone or email more than a half a dozen times, out of necessity.  And they've chosen this week to decide that they are unhappy with me about this.  Of course, it wouldn't occur to any of them to offer an olive branch of friendship--instead they've spoken to another person in my life about how I should be talking to them, and about how this situation is all my fault.  They don't understand why I don't talk to them.

There's also been some dispute about my mother's medical care--whether or not her situation is hopeless, whether she should continue to have medical care or be allowed to die.  (This started just before my mother started opening her eyes, which they may not even know about yet.)  They're thinking that my father should let her go. 

This is not remotely their decision.  There is a prioritized list of people who could make this decision--a power of attorney, then a spouse, then children, etc.  And doctors certainly have a lot of input.  But these people who have made my life miserable these last couple of days are not even on the list.  And unless something unthinkable happens to my father, I don't have any legal right to make medical decisions for my mother.  If I thought my father was making bad decisions (and I most certainly don't, and neither does my sister), my only recourse would be to get a lawyer.  But 'these people' (as I'll refer to them) are not letting my lack of decision-making authority stop them from getting upset with me.  I just don't know what to say about that.  Words like 'appalled' come to mind.  'Disbelief'.  Even though I didn't have any illusion about these people having warm fuzzy feelings for me (or I for them), I'm a bit stunned that people could behave this badly.  I shouldn't be--I'm old enough to have been around enough people by now to know this.

No matter how old I get, I don't think my fellow human beings will ever lose the ability to astonish me.

Some days I think a literal island for Erika would be a good idea.

I had a vivid dream about an island, just a few days ago.  There were people on the island, a campfire, food, music--a regular party.  And I stayed away from them.  A couple of them even asked me to join them, but I wouldn't.  Because I knew it would be hopeless to try to join in the fun.  How depressing, especially since it has such a ring of truth to it.

I had a talk with God last night.  Of course, I don't know which God I talk to.  But we do still talk.  I told him (her? it? them?) that I don't like the way things are being run.

I don't know why I would be feeling depressed....

And tomorrow morning I'll get myself out of bed and try to have a better day.  Today was a bit better than yesterday.  And any time my mother is a little better, that can't help but make my day a little better, too.

Wednesday, January 30, 2013

Exploding Sparrows

Well, my mother is still on the ventilator.  They're talking about the possibility of long-term care, now, if she improves.

I am still short of breath and coughing a bit, but I'm still doing housework and playing the piano.  I'm doing pretty well, considering the wild weather swing we are in the midst of here.  The high temperature today was in the upper fifties, and tomorrow it will be in the lower twenties.  The barometric pressure is incredibly low.  I almost expect to see my sparrows start to swell up one by one and explode from the lack of air pressure out there.  It may well be that the reasons I'm feeling so good are my awareness of the weather forecast's affect on my asthma and my willingness to hit it hard with the meds first thing this morning at the littlest sign of discomfort.  As a result, I'm doing far better than I usually would with weather like this.  OK, it helps to actually have some meds--last year all I had was prednisone.  The meds hardly cure me, but they're helping to make the asthma more manageable more often.

Thursday night I walked with my family from the car (only four or five cars from the front) into the grocery store, and I had a nice little asthma attack.  I could barely walk.  But in general I'm doing pretty well.  Once in a while I'm still a little more tired than I'm accustomed to.

It's occurred to me that if it had been my father who got sick, we'd have been in real trouble.

Mom doesn't drive.  It may be because I take after her.  And she's not very outgoing (major understatement--she'd be happy living on a mountaintop with a couple of dogs for companionship and protection--seriously, she's always said she wanted to be a hermit before she met my father).  And I was *really* sick the first week she was in the hospital.  If that had been Dad, somebody else would have had to drive her to the hospital.  And then wheel her around in her wheelchair.  Heck, she needs help with her clothing in the bathroom (hope that wasn't too personal).

And then after I got the least little bit well (at which point I would have theoretically pushed myself to the point of getting even sicker), I wouldn't have known how to get to the new hospital.  And, then there's the fact that my mother no longer does much housework, being confined to a wheelchair, with hands that don't work very well any more.

And then there was the tonsillectomy.  My daughter is doing very well.  I amuse myself these days by telling her to speak up.  But she is now past the two-week point, so she's allowed to do housework and go out in public and roughhouse if she wants.

We've all had colds here--except for me!  Maybe I had that cold once--there are a couple of hundred cold viruses, and you can develop immunity to specific ones.  And it's a good thing I never caught it (knocking on wood here--can't hurt), because if I catch a cold right now while I've still got another two to four weeks before I completely recuperate from the asthma, I will be screwed.  This is how it works--one illness, and a month of asthma afterwards.  A second illness, and I'm in big trouble.  A third, or fourth, and I'm debilitated until at least Memorial Day.  All I can do is hope I get well before something else hits.

Although, for Social Security purposes, it would be great if I got sick again....

Monday I had my lawyer's appointment.  She had a few questions, and some pointers for appearing in front of the judge on March 5.  And a few days ago I found out that my husband's guard duty had been moved to the same week as the hearing.  ('S***.  S***!  Who will drive me to the hearing?!  Ack!!!')  So at the lawyer's office I discovered that the hearing could be moved.  And that my husband could be a witness, which would be good--he always comes across as credible, while I tend not to (hard as I try to ape more neurologically typical behavior), so this can only work in my favor.  So we started a continuance--a delay of probably a month or two, so that he could be there.

A delay would also work in my favor, the lawyer explained to me, because maybe....and then she started stuttering, so I finished it for her:  (joyful voice here) "Maybe I would get sick again!"

And then the Guard moved his guard duty week again.

So now we have to write a letter for the judge who'd already requested evidence that my husband's guard duty was conflicting with the hearing--a letter stating that my husband had originally had guard duty the week of the hearing, but they'd moved it, stating who he talked to, what they told him, and when.  So now we're stuck with the original date.

If it's not one branch of the government, it's another.

Next week we go to the Cleveland Clinic.  Stay tuned....

Thursday, January 24, 2013

As Happy As I Make Up My Mind to Be

Well, it's been a week since I last blogged.  My mother is in really bad shape.  She went into ICU, and is now on a ventilator.  I haven't felt much like blogging.

I'm still short of breath and coughing.  I've been to the doctor today, and I've been given another nasal cortisone spray (because I asked for it), singulair tablets, and another inhaler.  But my meds were $50 at the pharmacy--even thought they're prophylactic, I probably won't get them refilled.  Maybe I'll have enough to at least make it until spring.

Just walking a few yards from the car to the doctor's office in the cold meant twenty minutes of coughing and breathing hard.

I was glad my husband didn't work today (all right, it's been bitterly cold and he hasn't worked all week).  Having him at the doctor's office meant a second person to convince the nurses and doctor that I'm not a hypochondriac.  And it meant I was assured of not getting lost today.

I've felt a little depressed today--no wonder.  And I've had to ask my father twice now for money to pay bills, or we'd have no phone and soon no van.  And two of my kids have had colds now--if I get this, I'm going to go downhill in a hurry.  At least we've been to the food bank and grocery store.  But I do definitely not want to be housebound with my mother in ICU.  It was bad enough the first week and a half she was in the hospital--I couldn't visit at all.  And I had to rely on my husband to drive me there.  And I had to explain to my father, who asked what I would do in an emergency, that I was going to need help getting there.

And I'm still sick.  Every winter is like this--I get sick, and then I try to catch up on the housework and get supplies, and then I get sick again, and then I try to catch up and get supplies again....

I'm just happy in January if I can play the piano and do housework, even if I can't feed the birds myself or walk to the mailbox.  I can hear myself breathing heavy as I sit here on the computer.

I just spoke to my father, who hadn't eaten dinner tonight--I've been pressurizing him to get a piece of pie or something, and it looks like he's finally going to.  I told him not to make me come up there.  Probably the first time in my life I have parented my father.  And I actually think I could go up there--I've been up there three times now, and I've paid very close attention, and my husband has helped me figure it all out, and he's drawn me a map.  I may very well even be able to find my way home again.  I had to memorize that, too.  My husband has done a good job of learning to help me learn routes, especially considering that his brain works exactly opposite from the way mine does--he does north/south/east/west, I do left/right (badly).  He just knows the lay of the land, I read signs and try to pick out a lone landmark (oh, wait, I know that row of white poles--isn't that the way I go home from the doctor's office?).  And I think my father is coming around, now that my mother's in no condition to be a go-between, and he's had to try to teach me how to get around the hospital.  So far I've gotten 'walk in the front door, lobby with waterfall is on the left, behind that is the cafeteria'.  Nothing wrong with my memory--I remember the floor and room number effortlessly.  I generally rely on passers by in hospitals to find my way--as long as I can encounter enough people with pointer fingers, I'll be all right.  Even if I don't know if it's the same person I asked before....

Meanwhile, I have an upcoming appointment at the Cleveland Clinic in a couple of weeks!  And my Social Security appeal hearing is a month after that.

Our homeschooling schedule has taken a serious hit lately.  After missing a week (which was planned) for my sister's visit, we missed another week for the flu.  Then all these appointments and visits with Mom & Dad.  These things are part of life, though--hopefully my children are learning to cope with adversity.  And the appointments--it may be that at some point my getting Social Security (and then food stamps and such) could allow us to keep our home, which would certainly benefit the children.

My eldest daughter is doing well--she's off most of the pain meds now, and she's even eaten pretzels.  She sounds just like one of the aliens from the movie "Galaxy Quest". lol

One more thing....the food bank.  It's so incredibly helpful right now.  We left with a huge cartful of groceries.  If I ever have money, that's the first cause I'll donate to--we owe them.  But what a grim place.  The people who work there are grim.  The people who are getting help are grim.  They seriously need a morale officer.  I can see how it happens--you're poor, and who knows what else is happening in your life that's contributed to that, and it's depressing.  But at some point along the way I made a decision to not. be. depressed.  Not that I never get depressed.  But I am going to enjoy life when I can.  Although that's been more difficult lately.

I miss talking to my mother.  I miss the lone friend who recently dumped me.  I miss having a church full of people.  I can't help but notice that my husband has dozens of people who are concerned for his well-being because his mother-in-law is in the hospital.  I have almost nobody.  My father and my sister and my husband.  One cousin I hardly ever talk to called last week, and I almost cried because somebody asked how I was doing....

Thursday, January 17, 2013

A little of this, a little of that

My mother is doing just the slightest bit better.  They think now that it's possible her trouble started, not because of the flu, but because of the fall she had when she got the flu--she basically just fell out of her chair because she was so sick she couldn't sit up.  The doctors have also said that the reason she's having trouble communicating is that she's delirious because of the flu.  Something I can understand, having lost little pieces of my own life the first week I had it.

I'm doing pretty well--all right, I'm not doing that well (I'd thought I'd try a smidge of denial), but I'm doing pretty well for me in January.  I suppose my definition of 'pretty well' is different that some people's.  I just went outside to take out each dog for the last time tonight, and fill the bird feeders, and stick a bag of trash in the dumpster by the door.  All in the cold air.  And now I'm having a fifteen-minute asthma attack as penance.  But at least I've been able to play a fair amount of piano and keep up with the housework.  It's better than being stuck in The Chair.  Last winter I spent way too much time in The Chair.

I had the twins bring in firewood this morning.  Just being in the house while the door was opening, allowing a bit of cold air to waft in from time to time, was enough to start me coughing.  Cold air is definitely my nemesis.  One of the villains of my story.

We had a tiny bit of good news here.  I'm not allowed to say where it's coming from, but we're going to get some help with groceries for the next three months.  And my sister is sending her monthly cash, so we'll be able to put gas in the vehicles and buy a few staples that we don't get with the help we're getting.  And hopefully we can pay the mortgage with the next paycheck.  My husband only gets paid every other week.

That W-2 can't come soon enough.

Maybe next week I'll be able to actually go out and get the groceries.  And go to the doctor.  An ambitious schedule of outings for me in my current condition.  And next week the temperature is supposed to go down to single digits.

I think an average person would go nuts here.  I haven't been out of the house in two weeks.  But I'm quite used to this.  In fact, going out and trying desperately not to let on how sick I am, and trying not to get any sicker, isn't really all that much fun.  The important thing is to keep busy.  There's another one of my arch-nemeses--Boredom.  I've been busy working on my latest nocturne, though, and trying to work on my memorizing skills, and reading my book on Tao, and cleaning the house, and homeschooling.  I can usually find plenty of things to do, especially if I can spend half the day out of The Chair.

It's been two weeks since the start of the influenza adventure, and at nine-thirty at night I am tired.  'Night.

Wednesday, January 16, 2013

Would you like some ice cream before dinner, dear?

Well, my daughter's home from her surgery, and all went well.  It is truly amazing what doctors can do now--a laser instead of a knife, an outpatient procedure instead of a week in the hospital.  She's still speaking a little, and not in too much discomfort for what she's just been through.

My mother is still in the hospital.  She has some kind of an intestinal blockage, and they've been pumping out her stomach, and are talking about one day's worth of dialysis to rid her body of some of the toxins.  Her kidneys are functioning better now.  She's spoken some 3-4 word sentences.  A couple of weeks ago she and I could talk each others' ears off--her mind functions just fine.

It's been hard for me, not being able to go in to visit her, especially when she ended up in the ICU.  There was just no way for me to drive up there.

It's a completely unfamiliar part of town, six or eight unfamiliar roads, and a sprawling hospital campus.  And I wouldn't be able to walk more than perhaps a half mile in this cold, after which I would probably be unable to walk through a building.  I'm glad my kids are old enough to help with the chores--hauling firewood, taking the dumpsters to the road and back, getting the mail, and even feeding and watering the birds when I can't.

And now I'm stuck at home for the rest of the week.  I'm not physically up to going anywhere anyway.  And I had a little bit of a setback this morning, which I am now recovering from.  Nothing too scary, just the normal ups and downs I always have when I'm sick.  I've been tapering off the prednisone, which may very well result in me eventually getting sick all over again.  Doctors just can't understand why I can't simply take my prednisone and recover on schedule.  A tapering-off week and a half of prednisone ought to fix me right up.  And my inhaler is mostly empty now.

Perhaps next week I'll take one trip out and go to the doctor.  And I may try my hand at having groceries delivered, because I'm definitely not up to that.

I like to think I can tough it out and go back to normal, but I can't.  I have been lucky enough to be able to play a lot of piano--yesterday I was really able to play, as opposed to the one-piece-at-a-time-followed-by-total-exhaustion of the day before.  I've looked at the nocturne I finished before Christmas and decided to revamp parts of it and flesh it out some more.  I'm pretty happy with this piece.  And I've been able to at least be useful as a homemaker again.  I've done a fair amount of light cleaning.  And we've finally resumed homeschooling today.  Reading spelling words for a spelling test out loud was difficult.  That's where my breathing is at today.

It's been difficult for me to accept that I'm just not going to be able to be there for my parents.  And even if my health were perfect, and my daughter was well enough to be left home alone, I still couldn't go--not without a chauffeur.  I've mostly succeeded in not worrying about what other people must think about me--that my mother is in the hospital and I haven't even visited.  Most of the people that would think that way aren't part of my life, anyway, if only because my lopsided brain and this disease have robbed me of those relationships.  One cousin did call yesterday.  After I got off the phone, I wondered if she believed I was really sick.  It's hard not to wonder when it's happened so many times with so many people.

I've been reading a fascinating book about Taoism.  It's made me think--among other things, about the difference between wanting what I want for it's own sake, or wanting what I think other people want me to want.  These days I have to mostly focus on what I want, because I can't have those other things anyway.  I want to visit my mother, but I don't have to care if other people want me to visit her.  Of course, sometimes I still do.

My religion these days has turned inward.  I think more about my relationship to the universe, and less about finding a community of like-minded people.  My life has turned inward.  I compose music to please my own tastes, read what I choose to read instead of what other people would approve of.  In some ways I'm lucky--it's not something that a lot of people have the leisure to do, composing songs and reading books and contemplating the universe.

Monday, January 14, 2013

I Have a Dream

Not a good day.  I had a minor setback last night because of a passing weather front, and then I woke up this morning to a seriously cranky spouse.  Still don't know why.  Just glad he went to work today.

A little more often, like maybe even once a week, what I'd like is to wake up in the morning and not have my life be all about me trying not to be the way that I am. (And before we blame it all on cranky spouse, it's definitely not just him.)  I've (mostly) accepted the days on end of being sick, but I'd like having that not be the focus of everybody's attention.  I've (mostly) accepted being unable to drive places or hear things or recognize people, but I'd like that be okay, too.  I have a vision of me just going through my day and everybody just accepting that this is the way it is.  As in, 'hey, there's 'erika', she's sick and she can't work and she's poor and her brain is all lopsided, but she gets up in the morning and she tries to take care of her kids and pets and house, and she's a basically decent sort, so let's welcome her to our species'.  Strewing flower petals on the streets where I'm about to walk would be optional in this fantasy.  Gifts would be fine, too.  Fan mail, anyone?

My mother has been moved by ambulance to another hospital this morning.  They don't really know what's wrong.  My sister has cancelled her trip this week--she's still pretty sick.  I'm used to this--when I get sick my expectations as to how quickly I'll get well are pretty low.  Hey, I'm up, dressed and everything today, did the chores, and it's not even lunch time.  I am thrilled.  Even played a little piano yesterday.  It would be nice if other people always understood why I can't just jump full-time (even while almost everybody around me is still at least somewhat sick) back into my normal routine.  But who ever said life was perfect?

I'm worried about Mom.  I want to visit.

And I'm just getting over the flu.  There's something every living being should know about getting over the flu--you are at serious risk of depression.  It doesn't matter if everything was going fine before it hit, and it doesn't matter if it's going fine when you're over it--you are still at risk.  Although maybe it would help if everything was going fine.

Guess I'll go clean some more house and play some more piano.

Sunday, January 13, 2013

Poor White Trash

Feeling quite a bit better today.  I'm still coughing and wheezing a bit, and my sinuses are still acting up, but I'm still improving.  My mother is still in the hospital.  She's only speaking one or two words at a time.  My father is taking care of her.  My sister (who lives several states away) is, I think, exhausted. 

I can't even visit my mother.  I would really like to go and visit her.

It's hardly the first time this has happened--that somebody in my life became seriously ill and I couldn't visit.  When my mother-in-law lay in the hospital dying several years ago, I couldn't visit.  My mother's brother had passed away, she was across the country, and I didn't have a babysitter.  And my mother has been hospitalized before, when I've been unable to visit.

Maybe it's partly because I've been so sick so many times, in isolation, that I wish I could reach out to the people in my life who are sick right now.  And watching everybody struggle through this illness has really brought home to me how isolated we are here.

Every month we count on my sister sending cash.  If she were too ill to do that, it would really hurt.  Especially if it happened while my parents were also unable to help.  We depend on that grocery money every other week.  And their help with bills.  It would quickly become a catastrophe if neither of them could help us.

My husband is trying to carry the financial load all by himself, with one part-time job, but he can't do it.  We have a few dozen dollars in the checking account, and nothing else coming until this Friday.  The grocery money will be due about that same time.  We spend the last grocery money keeping the lights on.  We get no help from the government, or from any charity.

And it's not just a financial problem.  My husband has been carrying other loads, too--having to go to work no matter how sick he feels, afraid to miss a single day.  Having to go to drill weekend no matter what.  Running every errand in the house at the moment.  Get every prescription from the pharmacy.  Taking the girls to all their church activities. 

He carries the total responsibility for our girls' social life, such as it is.  I can't network with other women.  I can't even go up to people in a group and ask how they're doing--I don't even know which person is which.  In a noisy group I have a huge amount of trouble carrying on a conversation.  It's basically impossible to hear.  It's become undeniably apparent over the years that this isn't something I'm going to be successful at.  I tried to pretend that I would catch on eventually.  But I have been a total failure at networking, and my children have paid a price for that.

And my husband--he'll have to take my daughter to her surgery.  I'll probably try to go, too, but even if I were completely well, I couldn't go by myself if I had to--I can't even find the hospital.  I hope I can even walk as far as I need to once we get there.  We'll certainly all need to walk slowly so I can keep up.

I should be going grocery shopping before the surgery, but I've learned (over and over again) that I can't be doing that to myself.  I'd make myself sicker all over again.  My best bet is to try to recover from this round instead of making myself sicker and then taking a hard fall the next time somebody exposes me to a tiny virus, or having a relapse after walking through a parking lot in the cold.  And it's not as if there is actually enough money for groceries anyway.

We're on our own here.  All I can do is depend on the groceries that have already been stockpiled (kudos to me), and hope no more bills get seriously out of control.  I would certainly hate to have to call my father while he's with my mother in the hospital, to ask him to give us more money, or to call my sister to ask her to pay a bill.  It may come to that.  I'm lucky to have them.  At least we can keep a roof over our heads--no small matter.  It's more than some people have.

And there's no one else to help.  No one to drive me to a routine doctor's visit tomorrow.  No one to keep an eye on the girls if I did go.  No one else to drive me to the hospital for my daughter's surgery if my husband were unavailable.  No one else to help take care of my daughter after her surgery if my health were to take a turn for the worse.

I've done my best to raise my girls to be self-sufficient.  I've tried to drill it into them that if I'm sick, they have simply got to step in there.  I've spoken to them lately about the need to just make the best out of the way things are.  They're all old enough now to realize that we're poor, and that I am alone, and that some kids have more friends than they do, and get to have decent clothes and go on vacations.  Welcome to the real world--there are lots of kids making do with a lot less.  At least they're not being raised by drug addicts, or being beaten, or missing meals.  At least there are books in the house, and internet access.  At least the neighborhood's safe.

Maybe it's one of the important lessons in life--that you make the best of whatever situation you find yourself in.  Maybe a cushier life wouldn't even be the best for my kids.

I wonder if it's just self-pity.  It's been a dark, dreary day outside today.  On top of that, after having been so sick for so long, perhaps I could be forgiven a smidge of self-pity.  It could be chalked up to fatigue, and a not-quite-yet-up-to-par level of oxygen in my blood.  But there's nobody to ask how we're doing here, except for the other sick members of my own family.  Nobody to keep an eye on how we're doing.

And it goes past that.  I'm homeschooling in isolation here.  I deal with my illness in isolation.  I go outside and pray--in isolation.  My husband goes to work, and church, but he deals with a lot of the fallout from being married to me in isolation, too.  Not much support out there for him, either--mostly just people not understanding why I don't work outside the home.  It's our own fault we're struggling financially--it was our decision that I be a homemaker that did this to us.  I'm not really that sick.  I'm not really struggling to drive, or recognize people, or hear what's going on around me.

I've spent too much time lately trying to convince government agencies and doctors that I'm not faking it.  It'll be worth it if I ever actually qualify for Social Security or food stamps.  But it's stressful.  My biggest battle is mental--not letting it get to me when I get sick, or the bills pile up, or I can't do things for myself, or people's negative attitudes toward me trying to redefine me into a piece of lazy white trash when that's just not where I want to go.

My children deal with this isolation, too--the lack of family except for those same immediate family members who have stuck by me, a lack of parents' friends, or even neighbors.  It's a good thing there's a church.

There are a lot of other families out there, almost an uncountable numbers of families, dealing with their problems in isolation, some living in poverty--far worse than ours.  I wasn't aware of them, growing up.  I wasn't raised around poverty, or drug abuse, or crime.  I didn't see people being told they're worthless, year after year, fighting not to believe it, fighting not to let their children believe it.  And I fortunately wasn't raised around people who were already convinced of their own worthlessness.  That worthlessness may be our worst enemy.

I hope someday we can all do better than this.


Saturday, January 12, 2013

How can we talk about 'Hell' if we can't say 'Hell'?

Good afternoon.  Well, reasonably.  I am slowly getting my will to live back.  Yesterday I noticed my gait getting back to normal--I've been kind of shuffling and leaning to the right a lot.  You'd think I'd had a stroke.

Today the weather is beautiful outside, and I've done a couple of very minor outdoor chores while I have the chance.  Tonight it's supposed to rain (in fact, we're under a flood warning, but not to worry, our little island is on high ground), and then sleet, and then snow.  I've walked outside, leisurely, a couple of times--that's the perfect amount of exercise for me today.  Don't want to end up face-down in the mud from over-doing it.

I got the chance, after waiting until two of my kids came home at 10:30 last night (in fact, my dad picked them up and brought them home so my husband could get a little sleep, which was really nice of him), and waking up when my husband left in the wee hours of the morning, to sleep, and sleep I did, until nine, without waking up.  That helps a lot.  Nothing like sleeping without waking up every couple of hours to take more pills and puffs of inhalers.

My mother is still in the hospital, at least until tomorrow.  My sister had a really bad day yesterday.  I'm a day or two ahead of my sister, and I guess it was good that I went in last Saturday and got started on all the meds when I did (Meds is too a word, spell check--who wants to write 'medications' a thousand times when they're sick anyway.  Spell check is not the boss of me.).  My kids all got better a little faster than I did--but then, they've all got a few years on me.

We usually take it easy on the once-a-month weekend my husband has guard duty--no school, not too much work.  But I'm not really in the mood to sit around all weekend after having done it for over a week already.  We did watch 'Dracula 2000' on TV today.  Not something I'd let younger kids watch.  It was pretty good--kinda 'kitchy'.  Is that a word?  Spell check might have me here.  Anyway, Gerard Butler was convincing as a vampire--no wonder he was hired to play the Phantom a few years later.

I started a book last night--'Love Wins' by Rob Bell.  Pretty good stuff.  My sister got it for me.  Even though a church would probably collapse if I walked into it right now, as part of my new practice of 'Eclecticism' I'll read anything.  It's a good book, and I ought to read it, because it's one of two books I bought my sister from a list of potential Christmas presents, and then she bought one for me and my husband each, so it might be fate.  I'm not so sure I entirely believe in coincidence these days.  And today's movie kind of tied into the book's theme, too--whether or not God condemns people to everlasting damnation.

Condemning people to everlasting damnation just doesn't sound very nice.  Sounds more like something the devil (if there is one) would enjoy.  I mean, I've met people I just don't like very much and don't really have any use for, and I'd still feel sorry for them if I had them off somewhere being tormented for eternity.  I'd probably rather just stick them on an island far away and leave them.  Or just put them to sleep or something.  Can souls be put to sleep?

I can certainly see the wisdom of having to separate some souls from others, if they're really demented or something--to protect the 'innocent' from those who would harm them.  Maybe being evil and demented is its own kind of punishment.  Maybe being ostracized from the rest of the 'soul' community would be enough torment.  Do souls need other souls to be happy?

That's enough cold & flu medication for me now.  I'm going to go see if I still remember how to play the piano.  Something not-too-strenuous.

Friday, January 11, 2013


Day eight.  I'd be worried if everybody else wasn't feeling the same way I am.  As it is, I've called the doctor's office and been given permission to keep taking my sinus meds even though I was supposed to stop after a week.  Can't do it yet--I stopped last night, and that was bad.  Can't drive myself to the doctor.  Can't find any other healthy people to take me.  Kids aren't well enough to leave the house yet.  The doctor isn't in today, so no prescription of stronger antibiotics until at least Monday.  I wouldn't even ask, but since I have this long, drawn-out history of suddenly raging-out-of-control-sinus-infections that lead to suddenly-raging-out-of-control asthma attacks, I thought it was prudent.  I've tried ignoring it, that certainly doesn't work.  I'll just keep taking my vitamins and drinking plenty of fluids.

Today I've set the ambitious goal of fifteen minutes up, and fifteen minutes down.  I am still woozy.  Last night, just once, I almost fell over while I was doing housework.

My sister was feeling worse last night--I'm still waiting to hear from her today.  All I can do is keep an eye on everybody from a distance.  My mother is doing a bit better and may be released from the hospital today.

But my husband has a light case of this.  So does my father.  Apparently even people who got vaccinated are feeling some of this.  My poor husband has to take our daughter for her blood test today, pick up a few groceries (ice cream and such) for her (fortunately for the birds he picked up their food yesterday), take the girls to a party at church (and they had another church function last night) which lasts 'til ten, only to have to get up at 2:15 a.m. tomorrow morning to drive to Indy for drill this weekend.  Fortunately somebody else will be doing most of the driving.  I'm  just glad he didn't have to work today--it's cold and windy out.  Actually, it's supposed to warm up quite a bit today.  I hope that approaching weather front doesn't do it's (customary) number on my lungs.  I'm still coughing and wheezing here.

House is a little more under control here.  After all, we wouldn't want a paramedic to see the mess. ;)  I'm going to make sure all the animals' water is clean and their food dishes are full today.  Yesterday I brought more wood in from the deck--I'm glad we had extra wood stacked there, because the rest of it is off across the yard and I don't want any of us walking that far outside.

All in all it's been quite a little adventure here.  Adventures are fascinating in novels, not so much in real life, though. 

May all our adventures be little ones.  I'm going to take my woozy self and do another fifteen minutes now.