Thursday, May 31, 2012

The Mower Saga: Part Two (and another prosopagnosia article) (and the first 'desktop pic' award)

The mower deck came back from the shop today.  And to everyone's delight here, it's about to rain buckets, so I thought I'd mow this afternoon once my husband put the deck back on our riding mower.  He had a couple of errands and a job interview to go to.

I mowed, wisely beginning with the lane and front yard in case the mower broke down again.  And after a while it did.  There is a little metal pole that connects the deck to the front of the mower, and it's bent and probably missing a piece on the end that would stop it from slipping out of the little hole on the front of the deck.  And I put it back.  All by myself.  But still it wouldn't mow.  So I looked into it further, and a belt had come loose.  And I put it back on.  All by myself.  I was extremely pleased with myself when the blades started turning.  It's not every day I can fix anything.  Not with my crappy visual skills.  I just learned that the thing on the mower is called a 'deck' when my husband took it off last week.

But then the darn thing broke again.  This time I couldn't fix it.  But a least I'd been able to finish the lane and front yard.  The grass hasn't been able to grow much lately, because of the nearly total absence of rain.

It looks creepy outside right now.

On a totally unrelated note, I read what I thought was an especially good article on prosopagnosia today.  Here it is:

And here's an excerpt:

"And it's not like forgetting a name, where you can apologize and ask again. In some cases, I can't recall people I've known for months or years. Basically, if someone is out of place or I don't see them on a usual basis, I am often stumped. There's simply no way of explaining myself. Except perhaps claiming to have been clobbered over the head and mugged moments before and feigning temporary amnesia. At least that scenario would make sense to most."

And on another unrelated note--it seems that is is in fact legal to keep someone from getting food stamps if they don't 'cooperate' with a work  program.  So no food stamps here.

And I got my 'school records'--nothing but a transcript that looks like alphabet soup and the IQ score from some testing that was done.  Not very helpful.

Oh, and I've decided to start awarding a 'desktop pic of the week' every other day or twice a month or so.  This is what's currently on my desktop.  And here's the very first one:

Ain't she a beauty?  It's from Astronomy at!/pages/AccuWeathercom-Astronomy/178186248887910

And that's it for today.  Bye!

Wednesday, May 30, 2012

It's Important to Floss

I took the girls to the dentist yesterday. 

This is what it's like when you don't have any money.  All four girls need braces.  A couple of them need them badly.  One child may someday have to have teeth pulled if she doesn't get them.  Another has a major cosmetic issue.  But they most likely won't get braces.

I'm trying not to be anxious about the future, but my husband is only working part-time.  My parents have helped us out--a lot.  Paid our mortgage, health insurance, used van payment, and phone bill, just in the last month.  They also help with groceries.  But they can't keep helping us at this level indefinitely.  I've tried and tried to get government help, and tried and tried to find work online that I can do.  The online proofreading business is just not going anywhere--they have no new websites to proofread, and haven't had any for weeks.

Braces are just out of the question.  And they always have been.  When you live under the poverty limit, you're too busy trying to keep a roof over your head to worry about braces.  Not to mention joining any extracurricular activities, or taking vacations.

I see other people's kids getting braces, but mine can't have them.  I wonder if this will have any affect on who my girls marry, on their careers.  If they escape the poverty, maybe they can get braces as adults.  I keep telling them to go to college, but my husband has just graduated and there is no job out there.  I keep hoping that they'll be able to get financial aid, because of course we haven't been able to save anything for their college.  I hope they don't have to take out huge amounts of student loans.

This is what it's like to be poor.  If medicaid decides to cancel us, I have no choice but to jump through every hoop they ask us to, over and over again, so that my kids can have dental care.  Sometimes they're quite rude, too, the people I have to talk to to try to get help.  I've learned to let them know immediately that I'm reasonably intelligent--I use as many big words as I can.  I get treated better that way.

I've filled out the same paperwork over and over.  They'll say that I have ten days to get it to them.  I've pretty much learned what paperwork I need now, and I have it ready when I re-apply, so I can send it the same day I re-apply.  Because ten days is not enough time to get their forms in the mail, and then get everything they ask for back to them.

They've cancelled us twice because of my husband's National Guard.  When he went into basic training, they insisted that he was working here at his civilian job, and in Oklahoma for the military (quite a distance from here), at the same time.  We had to get a letter from his employer in the mail stating that he was on leave, and then mail the letter to the government, and they had to process it, all within ten days.  This didn't happen fast enough, so I had to send them everything--copies of drivers' licenses and birth certificates, even.  As is they didn't already know who we are.

It happened again last year when he went to Germany for three weeks with the Guard.

I now keep copies of everything I might need, and plenty of stamps, and big yellow envelopes, so I can immediately send them whatever they ask for.  We also have to have a printer with a copy machine attached.  They would like us to have a fax machine, but we can't afford a land line.

I want my kids to be able to go to the dentist.

I personally don't go to the dentist unless I am in a lot of pain.  And then my parents have to pay for the root canal.  My husband is lucky--the military is taking care of his teeth now.  I read once this winter that dental care is one of the main reasons some poor people join the military--after a childhood of dental neglect, it's the only way they can get their rotting teeth taken care of.  I brush and floss a lot.  Unfortunately, people with CVID often have a lot of dental problems, because after all it is bacteria that causes tooth decay.

I'm aware that we're lucky to have a dentist in the neighborhood who takes medicaid.  Some people have trouble with transportation because they're poor, and then can't find a dentist that will take them.  Kids have actually died because of infected teeth.

We still owe the dentist money from the first National Guard incident, when medicaid cancelled us without telling us, and we found ourselves with a big surprise dental bill.  The dentist's office has been very nice about this.  They're always nice to me, even though my kids are on medicaid.  We pay them a little bit once in a while.

But braces are the least of my worries right now.  I'm trying not to wonder if at some point we'll get our utilities shut off.  I've wondered if people will at least pay our mortgage so we can keep the house.  Will we lose our minivan, meaning I'll be trapped at home unless my husband is here.  Will I lose my internet access.  I'd be grateful for my survivalist tendencies--we'd at least have a wood stove this winter.  But we wouldn't even have water.  Would we have to throw out most of the meat in the deep freeze?  Maybe we could get a hand pump for the well?  How would my kids get baths?  And what would happen to the pets if we had to move in with my parents?  Would I be able to get enough people to move my piano?

I just try not to think about it.  And, really, a lot of the stuff we worry about never happens.  But this episode of financial hardship is worse than the others have been.  And it's been going on since Christmas.

I'm still waiting to hear from Social Security, but that could be weeks or months, and the answer will probably still be no.  I've been told that the county FSSA office has no right to withhold food stamps and medicaid from us because I'm not working, only welfare money.  I could always consult a lawyer, but lawyers aren't for poor people.  Maybe I should try to reapply, but just for food stamps.  I know people who don't work and get food stamps.  I think I'll do that, but I don't expect it to work.

There just isn't anything I can do.  I want to do something.

Monday, May 28, 2012


What a world we live in today.  I got to watch a very nice computer technician, in India, take over my computer (for forty minutes) to fix my little problem.  Well, not such a little problem if it took forty minutes to fix.  All the virus/spyware/malware protection in the world is no guarantee, apparently.  But watching my mouse pointer doing all that cool stuff was a lot of fun.

Anyway, I'm back.

My mother told me an interesting story today.  When I was in the sixth grade, my teacher thought something was terribly wrong with me.  But then he looked at my record, including achievement tests, and, instead of failing me, gave me good grades because I was so 'smart'.  He thought I just needed to try harder.

Thanks a lot, dude (don't know if the sarcasm comes across in writing).

I remember not liking that teacher at all.  Or school.  And it got a whole lot worse after sixth grade.

Please Stand By....

I am having major technical issues.  I hope all you readers don't lose me (that would be three very disappointed people).   I was lucky to be able to start the computer (in safe mode) this time.  If you don't hear from me for a few days, either my computer has crashed and burned and I'm waiting on the guy at the repair shop, or I'm lying there decomposing next to my piano bench and nobody has noticed......

Sunday, May 27, 2012

Social Security Psychological Exam....Surprise!

Well, the examination yesterday went pretty well, I think.  I wouldn't want to get my hopes up.  At least the doctor was nice to me, and I was never accused of being mentally ill.  In fact, it didn't seem like I was on trial this time. (I've experienced that in ERs before--remind me to tell you how scary that can be sometime.)  She seemed to actually believe me.  She was really friendly.

Apparently my first doctor said I am capable of doing light work.  This doctor made a comment about the weeks and weeks I would miss because of my illness.  And she's right--today I would be quite physically capable of working.  But employers won't just give you a few months out of the year off whenever you get sick.  I should know--I've tried.

This doctor also suggested that I get my public school records, and I've sent the school system an email today requesting that information.  I was diagnosed with Central Auditory Processing Disorder while I was in high school (by a private psychiatrist), and the doctor I saw yesterday thought those records might help.  I should think so--I flunked out of high school and had all kinds of problems.

But I really don't think my hearing problem is the worst of my problems--by the time I've gotten lost on the way to work and failed to recognize my boss and co-workers, well, CAPD is just one more thing.  And when I'm trapped in my chair being too sick to get myself dressed or get my own food for weeks on end, CAPD seems like the least of my problems.  I'd certainly like to get rid of my immune deficiency and asthma before getting rid of the neurological problems.

But it was kind of startling when my visual memory was tested.  Nobody's ever bothered to test this before, which is sad considering how many times I've complained about getting lost and not recognizing anything.  I was very pleasantly surprised to be mistaken about what I said in a previous blog post--that I wouldn't be tested for anything that's wrong with me.  It's a truly novel approach for Social Security--testing me for something I actually claim to have.

Even if I don't get Social Security, who knows when that testing might be useful.  I wonder if it could affect my ability to get accommodations in a workplace, for example.  (If only I were healthy enough to keep a job.)

And I was surprised at how badly I did on these tests.  I was left wondering where my brain had been when I was looking at the random shapes and squiggles.  I just can't remember them.  I hadn't realized how badly I would bomb a test like that.  It was startling, almost upsetting.

I suppose I should be happy that I flunked parts of the test, but it was unsettling.  Like seeing an x-ray and finding out that a part of my brain is missing.

On the other hand, I did spectacularly well at remembering matched pairs of words and retelling stories after I'd heard them.  So my memory does work, just not my memory of what I've seen.  In fact, the few shapes that I'd copied successfully (I think) by hand and the few cards that I'd placed correctly (I think) on a board--many of those I did remember.  I suppose if my hands didn't remember anything I'd have real difficulty playing the piano.

Anyway--it is still extremely hot and dry here.  We went out last night to watch auto races, and it was really hot and muggy.  I'd gotten up early yesterday (don't know why--maybe it was nerves about the exam), watered plants and birds, did housework, went to take that examination, and then stayed up late at the races.  I am tired.  I think years of being sick have trained me to just ignore my physical well-being and keep going no matter what.  I'm lucky I didn't get heat exhaustion last night.  And for a while this afternoon I had trouble staying awake.

I was told after the exam yesterday that I should be tired. And mental exertion is tiring. But I couldn't help thinking, I deal with this all the time--getting lost and trying to figure out who people are and what they just said. It is tiring. I couldn't find people at the race and had a lot of trouble hearing conversation.  I've just gotten used to it, but still, being around a lot of people eventually wears me out.  I kept thinking about how isolated I am in public places. I had a good time, anyway. The people we went with know about what's wrong with me, too, which helps.

Oh, and we'd stopped at a garage sale after the exam and got three used bikes for the girls, really cheap. And then there was an ice cream truck and I bought them all ice cream. That was a necessity--they're country girls and they've never had ice cream from an ice cream truck before. :)  I grew up hearing the music on summer afternoons ('Have you ever seen a lassie, a lassie, a lassie....").

And now it's almost supper time, so I've got to be going....

Wednesday, May 23, 2012

We Are Here, We Are Here, We Are Heeerrreee!

I've been composing again--Mazurka No. 3 is off to a good start.  I did a bit of yard work this morning, hoping to beat the heat.  The forecast is for several sweltering days with little or no rain.

I'm waiting on a package from my sister.

This all by itself wouldn't be worth mentioning, except for the runaround I've had with the post office.

They'd attempted to deliver the package on the one day last week I was out, and I would have had to have signed for it, so they couldn't leave it here.  I've been trying to figure out a way to pick it up or get it redelivered.

First I tried to call the local office (thinking that it would be better to talk to a small-town clerk than to call the national post office number).  But I couldn't find the number anywhere.  So I called the national number.  Turns out my reluctance to do so was well-founded.  I found myself in computer-automated hell.

After reassuring the computer that I don't speak Spanish, I was told to say one of four things.  But none of those four things was anywhere near what I needed.  I argued with the computer, which kept repeating, "You can say (A), (B), (C), or (D)" every time.   It was just like speaking to a toddler.  After going around several times, and then demanding loudly that I be allowed to speak to a person ('I need a person.  Person.  Per-Son.'), I finally hung up.

Then I got online again, to try to find out about the package.  I have an article number, but the website said there was no such package.  Figures.  So I tried to send an email to the post office.

I entered my name, address, phone, and email address. Then I went through several questions designed to catch me before they end up having to actually read an email from me.  But none of the questions related to my problem.  Finally, after choosing options as best I could, I typed a polite complaint and request for help.  After which I was again asked for my name, address, phone, and email.  The website refused my zip code several times, but finally took it.

So far so good.  Mission accomplished.  I pulled out my chair and little exercise bicycle and got out my phone to call my mother.  After a few minutes, one of my daughters brought in the mail.  And there was a little card stating that they tried to deliver the package today.

Please understand....I have been home today.  All day.  Every minute.  We have two big dogs that bark.  They did not attempt to deliver that package.

If the global warming doesn't get us, the bureaucracy will.

Monday, May 21, 2012

Jameson Irish Whiskey Commercial

That's what I was watching last night, unintentionally, when I suddenly found myself possessed by the piano music in the background.  I'd never heard it before, but I was certain it was Chopin.  Chopin just 'tickles' my brain in a way that nothing else does.  I thought I'd heard just about everything Chopin had written, but I'm always on the lookout for some obscure, unpublished work.  Or some composer who got lucky enough to write a few measures that sound like Chopin's work.

So I got online and started looking.  I almost had a fit when I found a website where someone had said it was a violin concerto by Mozart.  This was definitely something that was written specifically for piano, and it did not sound like Mozart.  Which was almost exactly what someone on the next website said.  Then I found someone claiming it was Chopin's waltz in A minor, but I knew that couldn't be true because I've played that one, many times.  But after a few more websites it dawned on me to put 'posthumous' in a search engine with 'chopin waltz in A minor', and there it was.

It's a good day when I can find some little-known work of Chopin's that I've never heard of before.  I found the sheet music and printed it out, and I've been playing it today.  I'm certain that it's something he wrote when he was younger--I'll have to poke around online and see if I can find out anything else about it.

And then I had an epiphany today--the reason I've been having trouble making my nocturne work is that it's a waltz!  I'd actually put a small waltz in the middle of it, but now I've made the whole thing a waltz, and I've basically finished it.  A little 'tweaking' left to do, that's all.  I worked on it all afternoon, and when the dogs started barking at something (never did find out what) I realized it was after four--I'd completely lost track of time.  This is something that just never happens to me.

I've had 'waltz' on the brain lately--several days ago I played Joplin's "Entertainer" as a waltz.  That was fun.

It's funny, how my brain seems to be going on ahead without me sometimes.

Not much else going on here.  It's very dry outside.  And hot.  Especially for May.  We're all sitting here after dinner, watching a "Sliders" rerun.  The kids are liking this series.  And I'm thinking that surely there must be an alternate universe where I'm a concert pianist or a composer. :)

And now I'm going to go look up that waltz.  The search engine is one of my favorite inventions.


Saturday, May 19, 2012

The Day I Made Everybody Else Faceblind

I got something from Social Security the day before yesterday.  I was certain it was a denial letter, but, no, it was a form for another exam.  In only a week.  This one is a psychological exam.  I'm not sure how I feel about this--will it be yet another IQ test?  I've had several over the years as people have tried to figure out What's Wrong With Deb.  It would be way too much to hope for it to be a test for something, like, oh, I don't know, maybe one of the neurological conditions I have.  It'll probably be some standardized test they give everyone, just like the physical exam a couple of weeks ago.  I hope the last doctor doesn't think I have some kind of mental problem.

I know now something I didn't know years ago--that people with Asperger's tend to get misdiagnosed with various mental illnesses.  I've had problems with that in the past.  I have to assume that none of them really knew what they were talking about, especially since no two people ever diagnosed me with the same thing.  I even went to a few close people in my life once to ask if they thought I might be mentally ill. (Their answer was a unanimous 'no', in case you were wondering.)  I trust the people who know me best more than professionals who've seen me once or twice or had me fill in little multiple-choice circles on pieces of paper.

Another thing I know now is that I have very little facial expression.  I don't know if it's due to the Asperger's, or the prosopagnosia.  It's not unusual for people like me to completely fail to read other people's facial expressions; maybe that's why I'm not so good at mimicking them.  I've been told that I need to exhibit more enthusiasm, more cheerfulness.  I've seen myself on videotape--I can look like a robot, even when I'm feeling happy.  It was jarring to see.  I don't imagine this helps with psychiatrists.  At least now I'm aware of it.

The weather has been getting very dry.  We saw a raccoon in our bird bath today--the first mammal we've ever seen there.  I've started putting some water for the 'critters' out back behind the house.  And I've warned the girls to always take a dog outside with them--which we all do anyway--because sometimes thirst makes animals a little bolder about coming right up to the house.

And now on to The Day I Made Everybody Else Faceblind.  One of my daughters told me I should post this story on the blog.  It's from a few years ago.  We went to a children's museum where they had a giant maze set up.  I had the girls all dressed in matching red sweaters with multi-colored striped sleeves.  When they were younger I used to dress them all alike, and fix their hair alike, especially if we were going somewhere where there were going to be a lot of people.  I don't recognize my own children.  Now they're all old enough to find me.

I didn't mean to do it.  I let them all loose in the maze, staying at the only entrance so none of them could leave without me.  It wasn't until they were finished and I started collecting them that I realized what I had done.  Every time the people in the maze had seen another red sweater, they'd thought it was the same child.  People started coming out of the maze and expressing their disbelief that there had been four of them.  I'd confused the heck out of those poor people.  Come to think of it, I made them faceblind while they were also lost.  I gave them all a pretty good simulation of a normal day for me.

I'm going to spend the next couple of days playing through all of Chopin's nocturnes.  I still need more material for mine, and I'm hoping some form of inspiration will strike eventually. 

I hadn't realized how late it's getting now--time to go.  I'm at my mental best (such as it is) first thing in the morning.  Good night!

Wednesday, May 16, 2012

A Typical Day

I've found that it's harder to avoid a pity party when you don't have any way to distract yourself.  I'm doing my best to stay cheerful today.

At 8:30 this morning I went out to mow the lawn.  The riding mower has been having all sorts of problems this spring.  Today, after maybe fifteen whole minutes of mowing, the belt snapped.  In two.  We need a new belt.

My husband's graduation ceremony is in a couple of days.  We might have company.  So I got out the push mower.  The old one that we can't afford to get fixed, that doesn't self-propel any more.  It also doesn't like to start, which means that once you do get it started (having made sure the tiny gas tank is full first) you don't stop for anything except smoke coming from the roof, or profuse bleeding. ("Just put direct pressure on that, honey, until the gas tank goes empty.")

Did I ever mention that I have a very big island?

It's 1:00 p.m. now.  Whenever the mower breaks down or runs out of gas, I take a break.  I've just run out of gas, so it's break time again.  I've still got maybe a third of the lawn to go.  Sigh.  I am exhausted.  I do know it could be worse, but sometimes I get so tired of having broken-down **** to deal with all the time because I can't afford to get it fixed or buy a new one.  And if you were on the starship Enterprise and could beam me away, for a moment there'd be an outline of bits of grass and weeds left where I used to be.

At least, instead of having one long pity party (just a few short ones), I've started working on my latest nocturne.  I'd been sorta stuck, but I think I'm unstuck now.  Composing is a lot of work.  It's good to know that I can mow and compose at the same time. :)

And while I was mowing, the girls got into a shoving match and broke one of the small windows on our inside front door.  And then the next time I mowed, one girl locked everybody out of the house.  I needed somebody to do dishes anyway.  I told them I'm almost hoping somebody else is bratty because I'm getting behind in my chores now.  I'd even done a lot this morning before I started this mowing ordeal, but it's amazingly tough to do housework when you're not actually in the house.

I've still got hedge clippers and the weed whacker to go, and some more nettles to pull (I saw them while I was mowing).

And FexEx has our printer ink but they can't find our house.  It's not their fault.  You see, our house is numbered wrong.  Try telling that to the people who could fix it.  The government not only doesn't believe I'm sick, they also apparently don't think I can count.  They've told me I am mistaken. 

The good news is that if I ever get into serious trouble, I'll have some extra time to get way from the bounty hunters, because they'll have a great deal of difficulty finding me.

And now I'm off to mow some more.  Sigh.

Monday, May 14, 2012

Fasten Your Seatbelt!

Another blog post during a movie--well, I'm not watching all that closely, because I've seen it over and over, in bits and pieces.  Zombieland.  Rated R, and it's pretty gory, and there's a lot of  'inappropriate' language, but it's all in fun.  And it's really funny.

I went to visit my mother today, with my girls.  We took her a basket of little presents for Mother's Day, and went out and got lunch and brought it back.  I played their piano for a bit.  I'm happy with the way my latest composition is coming along.  Anyway, we also ran a few errands and went to the library.  And we dropped off a little box at the post office for my niece.

My sister has been sending packages for the girls and I for years, so I've decided I must send them to my niece.  This is, I think, the third box.  She's three years old.  Yesterday we put together a little photo album for her and sent it in the box with some other small things.

And I almost got lost on the way to the local dollar store.  I've only been there three or four times--it's a new store.  The problem is, you have to turn on a road before the store.  And I look for a driveway and miss the road.  I told the girls to yell at me next time.  They've done it for me for other places.

I've still got the minor ear infection, and a small cold since Friday night.  I'm very glad it's not January.  I'd probably have pneumonia by now.  As it is, it's not really slowing me down at all.  (Knocking on wood here.)

It's three hours 'til bedtime now, time to get the girls and me started on evening chores, and then it'll be time to play some more mazurkas.  School tomorrow.  'Night.

Friday, May 11, 2012

Snap, Crackle, & Pop

I have an ear infection.  I'm forty-six years old, the weather is beautiful, and I haven't even had a cold, but here I am anyway, with cotton in my ear because that often helps.  If it doesn't go away soon, I'll start a course of the antibiotics I always keep on hand.  Repeated ear infections are one of the warning signs of immune deficiency.  I know they say you're not supposed to take antibiotics for an ear infection these days, but they're not talking about people with CVID.  Then again, the weather's nice, and this isn't a bad one, yet, so maybe I'll squeak through without the pills this time.

I started writing my first nocturne Wednesday night.  I sat down to write a mazurka, but a nocturne came out.  It's been playing itself in my brain while I've been going about my business today.   I was sitting at the computer reading the news and eating lunch, and it kept playing itself in the background.

We're sitting here watching 'Seven Pounds'.  I don't know if it's possible for Will Smith to be in a bad movie.  This is the kind of movie you really have to concentrate on.  And I wouldn't let a young child watch it. 

And it's almost over now, so I'll have to go play the piano and do some more housework.  I've pretty much won the war against the weeds outside for the moment--they've been putting up a very good fight.  We've got nettles this year--they're kind of sticky plants, and they don't have roots--they just lay their strands all over all the other plants and start reproducing like crazy.

One of the good things about my life--I'm almost never bored.  If I run out of yard work, there's always house cleaning (in between all the piano playing), and if I get tired of doing that, there's always the entire world wide web. :)  If the lights ever go out I have an awful lot of books here.

Movie's over, gotta go now....

Thursday, May 10, 2012

Liar, Liar

My mother feels insulted.  So does my husband.

The good news is that it's not because of anything I said.  It's because of how they've both been treated by Social Security.

My mother said the other day that she feels as if they think she's lying about my disabilities.   I told her I think they assume everybody's lying.  But she's not accustomed to this.

I thought about this, and then I asked her if she'd ever been accused of lying.  She said no.  My mother is a very honest person.  In fact, if anyone in my immediate family says they're going to be somewhere or do something, you can be certain of it.  So I can see why she doesn't get accused of being untruthful.

Me, on the other hand....

Wow.  I started getting accused of lying in grade school.  Teachers thought I was lying about having trouble with my schoolwork.  Gym teachers thought I was making it up about being totally 'out of sync' with my physical environment.  It didn't get better in high school.  When I was tested because of my assortment of high and low grades (and I know I failed some of the tests), my parents were told nothing was wrong with me.  Since I got high marks on some of the tests, I must have been faking.  They were also told that I wasn't really sick.  After high school, employers were quick to assume that I wasn't really sick when I said I was, and most doctors were quick to agree with them.  When I had trouble learning something, most people thought I just wasn't trying hard enough.

I've told various people in my personal life over the last ten years or so about my neurological problems, and my immune deficiency.  Sometimes they believe me, sometimes not.  Quite often not.  Maybe it's typical for somebody with autistic tendencies to be surprised, but I used to think that if I told the truth all the time, people would eventually figure out that I was telling the truth.  I've been surprised that I can know people for decades and still be accused of lying.

Maybe it's partly the prosopagnosia--not only do I not recognize faces, but I suck at facial expressions, and I also suck at making them.  Eye contact isn't one of my strong suits, either.  Maybe I don't appear to be telling the truth.  Maybe it's even partly because I no longer expect to be believed that I don't seem believable.

And once people assume that I'm lying, it's not much of a stretch for them to believe that I'm lazy, or that I'm no good, or that I might be 'sleeping around', or doing drugs, or whatever.  I've been surprised at this, too.

Then there are the social workers when I apply for government assistance, the doctors and nurses in hospitals, the Social Security Administration.   I've heard it over and over again, that I'm not telling the truth.  And with these people, I don't think it's just me.  I think they assume that anybody who's poor or not working is a low-life.

My husband and my mother are new to this.  I've just gotten used to it.  And lately I've gotten angry about it.  There's no point in trying to convince people and I've stopped trying, and I'm better off for that.  I'm better off keeping the negative people as far away from me as possible.

But I do wonder what it would be like to be generally thought of as an honest, decent person.


Tuesday, May 8, 2012

Mazurka No. 1 (or, the Bad Geek Tries Again)

Good morning!  I'm a morning person, so this is the best time of day to try to force my brain to do something it apparently doesn't want to do.  Have I ever mentioned that my brain and I have a love/hate relationship?

It looks like the website I used to post my first mazurka isn't working any more.  I'd checked it--I'd even borrowed the kids' laptop to make sure it would play.

So let's try again.  Here goes:

Okay, back to the kids' laptop again.  The mazurka worked, although the sound quality makes me picture a victrola with a cute little dog sitting nearby.  Or a harpsichord.

Fortunately, even though I've been having delusions of grandeur, my brother-in-law is an actual geek, and he recommended this site, which saves me the trouble of sifting through dozens of websites like I did last time, trying to find one that works.  It wasn't too difficult to use, and the website didn't have anything to do with my laptop's decision to place all of my do-it-yourself singles into one album and label it "Dire Straits:  The Sultans of Swing", which (luckily) doesn't seem to affect my posting of just the one song here.

Well, it's almost nine o'clock, time for school to start.  I'm a bit behind in my chores now--got the house tidied and the school papers set out, at least.  Had breakfast.  Now I've got to go play catch-up.


Monday, May 7, 2012

But in Her Web She Still Delights *

Yesterday I tried to explain why I'm concerned about parking in a strange place, and I realized I haven't talked much about topographic agnosia here, except for the occasional note, mostly about getting lost. But for some reason it's come up in my life several times in the last few days.

I'm not even sure it's really (or only) topographic agnosia, or just my generally bad visual skills, but I have a lot of trouble parking.  In fact, I flunked the driver's test several times before I got my license, mostly because I couldn't parallel park.  Driver's ed had also been a nightmare--I'd flunked that, too.  Aced the written part.  Effortlessly.  Perfect score on the written test each time.

I still can't parallel park.  Not only can I not tell how far away things are, but I have trouble trying to figure out which way to turn the wheel to back up in a particular direction. (I was in junior high before I could figure out which was my right hand and which was my left without raising my hands to see which hand had two freckles on the back.)  I can't even pull forward into just one space--I need two or three spaces next to each other.  Sometimes if there's not much room I have trouble pulling out.  I try to avoid getting myself into tight spots--I've made people mad by not being able to figure out how to get out.  Sometimes I've had to park taking two spaces because I couldn't get into just one.  This upsets people, too.  Pulling into new parking garages, gas stations, or drive-thrus can be a challenge.

Sometimes I can't go somewhere because I don't have anywhere to park.  It's not as if I can just circle the block or drive around, looking for a place.  I have to memorize the route to where I'm going to park.  If I have to walk somewhere from there, I have to memorize that, too. Then I have to memorize the route back to the car, and the route back home from there.

A detour means I might be lost for hours.

When I was younger, I couldn't go anywhere by myself at school.  I got into trouble repeatedly for being late to classes in junior high and high school, long after the school year started.  I didn't even get my driver's license until I was twenty.  Back then I couldn't figure out north, south, east, west.  Somehow I've managed in the last twenty years to get a 'template', a very basic picture of where the main cities and roads are.  A stick figure where most people would have a portrait.

My world, at least when I'm the one driving, consists of a few main streets.  In the city nearby, there are (counting now) four main streets I can drive up and down.  I can go to my mother's house, the main library (just recently acquired this--I used to have to walk from my parking garage), one parking garage (from which I can wander around downtown until I find a few museums and a couple of restaurants), one Wal-mart, a Chinese restaurant, an outdoor shopping mall (which includes my one movie theater), and the zoo.  Oh, and the emergency room at one hospital.  In another smaller contiguous city, I have one main road, along which is a grocery store and several fast-food places, and a gas station.  I can also find another branch library (also recently acquired), and my credit union.  In another small city, I have one main road, which leads to our vet, another Wal-mart, a farm store, and a small complex which includes a grocery store, a Chinese restaurant, and a Salvation Army store.  Until they located that Salvation Army store at that complex, I could never go to a thrift store.  Oh, and our nearby small town has two gas stations, a library, and a couple of restaurants.  This is my world.  If I'm by myself, I can't go anywhere else.

Well, that's not completely accurate.  I can go lots of places.  I have, lots of times.  I just can't go anywhere I actually planned to go.  Once I found myself on the interstate and wound up in another city.  Once I was lost for hours in the dead of winter in a car with no heat.  Once I got lost on the way to my mother's house for no apparent reason.  The children have learned to speak up when I'm approaching our destination in case I drive right past it.  After all, if I drive past it, I might very well be unable to turn around and find my way back.

If I want to go to a job interview, or a doctor, or a social event, or even a new restaurant, somebody has to take me, or spend a couple of hours driving me there and back until I can memorize the route.  And they have to do that the day before if there's any hope of my retaining the information long enough to get there.  I've tried to use a GPS, but it takes so much concentration to drive that I can't use it. (It's also hard to hear over the car engine--pesky central auditory processing disorder.)

I can't even meet up with a homeschooling group because of this--not unless they'd meet in one of the places on my list.

I'm lucky--my mother never learned to drive at all.  People don't understand why she never got a license.  As for me, I get told to pay attention a lot.  My oldest daughter is getting ready to learn to drive.  I hope she doesn't have as much trouble as I did.  My husband is going to teach her.  I probably wouldn't even be able to take her to a driver's ed class.

My sister is planning to visit this summer.  Recently the possibility has come up that I might have to go to a baseball game with my parents and my sister, bil, and niece while my husband is gone this year.  It's still difficult to explain that I'll have to park at my parking garage and walk.  I'll have to map out the walk to the game.  And the route back.  And it will be dark when we get out.  I'll be walking with four kids in the dark to a parking garage near a neighborhood known for it's homeless population.  And then I'll have to drive home in the dark.

I really love the internet.  I can go anywhere online.  Without the internet, there would be no 'volunteer work' (clicking to donate for free), no news about what's going on in my cousins' lives, no specialized medical information so I can take care of myself, no updates on the world of homeschooling.  I can't go to a concert to see a pianist play, but I can watch many of the best online.  I can't go to college, but I can read about ancient Greece over lunch.  I don't even get a newspaper here, but I've got all the news online I could ever want.  The internet connects me to so much out there.  Without it, I'd live in a much tinier world.

*  The Lady of Shalott by Tennyson


Saturday, May 5, 2012

How to Save Money When You Don't Have Any

No, I haven't broken my informal resolution to stop worrying about money.  My mom and I were talking (about somebody else) and this came up.

For years, I've been looking for some ways to save money.  And most of what I've read in magazines and seen on television and read online has just been hysterical.

This is a rough compilation from all my sources over the years:  I think I'll call it something like "How to Save Money so Your Bills Get Behind More Slowly".  Or how about "How to Save Money for Real People."  Not that wealthy people are imaginary. lol  But maybe this will help somebody.  Some of these items are common to money-saving lists.  A few are mine.

Make a Budget--write down your income and expenses.  I do recommend this.  While it doesn't do much good if your basic expenses are way more than your income, it is a good idea to know where you're at, even if you can't fix it.

Figure Out Your Discretionary Income--always good for a laugh.

Set Goals, Invest, & Open a Savings Account--another good laugh.

Prioritize--this might be my personal favorite.  Keep a roof over your head.  Keep your vehicle so you can keep getting that paycheck.  Keep your utilities turned on.  Keep the kitchen stocked.

Eat Out Less--twice a month at the cheapest place we can find, when we go grocery shopping.

Eliminate Starbucks--hate coffee anyway.  Although the suggestion to eliminate soda pop really hurts. :)  Although I don't spend much on soda--I refuse to buy it if it's not at a really good sale price.  That's one of my few 'vices'.

Eliminate the land-line phone--done.

Bundle--cable (if you have it--one of my husband's few vices), internet, & cell phones.

Eliminate newspapers & magazines--haven't had them for years unless it was a gift.  And the occasional DVD I buy is at $5--maybe $10 if I really want it.  The library is definitely my friend.  So is the internet.  And garage sales.  And Christmas--I always ask for books & sheet music and CD's.

I like this one--Always Use the Rebate.  They count on you not being organized enough to get your money back.  Beat the system.

Have Bills Paid Automatically.  Bad idea--if you don't have enough money coming in every month to pay the mortgage, used car payment, utilities, and other dire necessities, you're going to be bouncing transactions all over the place sooner or later.

No Credit Card Debt--good idea if you can manage not to let your refrigerator break down, your kid doesn't need a winter coat, etc., but personally my credit is so bad I can't get a card.  When we did have one for emergencies, I always tried to pay it off when our tax refund came in.  Those interest rates are murder.  Paying off debt saves money in the long run.

Refinance Mortgage--see previous.

Have Frugal Friends--because other people won't want to be your friend anyway.  (That didn't sound bitter, did it?)

Bargain--good idea--it can't hurt to ask.  And it can be fun.

Circulate Air, Weatherproof, Turn Off the Lights, Turn Down the Thermostat, Don't Run the Water Too Long, etc.--good ideas.  Program the thermostat if you can afford one that does that.

Stay Home Once in a While--done--we hardly ever leave the house except for groceries and church and the library.

Cut Back on Vacations--our eleven-year-old twins took their last vacation in a stroller.

Do the Matinee--hardly even see movies here--we do have Netflix--it's cheap entertainment.

Carpool--not feasible in rural areas like mine.

Use Public Transportation--the only public transportation here is feet.  I'd love to have a subway station nearby.  Just don't like crowds.

Lose Extra Car--also not a wonderful thought with four kids and a husband who's in the guard (used to be working full time and going to school at night).  I have a fond memory of a social worker, when I applied for food stamps years ago, telling me I 'had' to get rid of the car when I was in the midst of a high-risk pregnancy.  No car would have meant no medical care.  But this reminds me of a good one...

....Bundle Your Errands.  We don't leave town for home until we run every errand we have or one or more of the kids starts to have a meltdown.  But then we're a way from town.

Get Regular Gas, Change Oil Less Often--not sure this is great advice, but you do find yourself doing it when things are tight.

Shop Around for Insurance--done.

And, Get Term Life--cheaper than Whole Life and no cash value to keep you from getting food stamps if you qualify.  I've been told we shouldn't even have term life--a bit scary for someone who can't work, especially with children involved.

No Pets--too depressing to contemplate. (:  And living in such an isolated place, I wouldn't want to be without my two big dogs.  Okay, I just like my cats.  They all eat cheaply.

No Gym--never seen the inside of one.

Use Baking Soda for Toothpaste--taste it, I dare you.

Use Natural Cleaning Products--I don't do this, but I do buy cheap.

Here's a Good One--when you think about purchasing something, think of how many hours of work it would take to purchase it.  Is it worth it?

Buy Used--you know, a car depreciates a lot the first day you own it.

Shop at Thrift Stores and Garage Sales--I do this--and garage sales are a great opportunity to practice your bargaining skills.  (And show up first thing in the morning, when the good stuff is still there, and just before they close, when they're anxious to get rid of everything.)

Tax Refunds--I always sit down and figure about 90/10--90 percent things I would be proud of myself for spending money on, and 10 percent I wouldn't be ashamed of because of how I spent the 90 percent.  People like me with kids get a large handout refund these days.

Don't Use Credit Cards to Pay Medical Bills--Lie if you have to, tell them you don't have a credit card.  I don't answer my phone if I don't know who it is.  Medical bills are not a priority unless they're getting ready to send the sheriff to your house.  Shelter and transportation and utilities and food are all more important.  Let it go to collections if you have to.  It's not fun, but there it is.

And Here's Some Tips About Groceries:

Buy Generic--I do this all the time.  The quality's almost always the same.

Use Coupons--not as good a deal in general as it used to be.  And sometimes it's cheaper to buy generic without the coupon.  But you can often find a couple.

Buy in Bulk--just make sure you know what a good price is--you can't always depend on stores to just give you a good deal out of the kindness of their hearts.

Buy Ahead on Sale--This is also a good idea for those times when unemployment or unexpected bills come up--you won't need a lot of things because you'll already have them.  I posted a list of things I always try to have plenty of in case of emergency on 1/16/12 if you're interested.

Another thing--I don't often walk into a supermarket without checking a few of the pricier items like meat, cheese, and peanut butter.  It's a good way to save money.  A couple of times lately I've bought cheese in bulk when it was on sale and saved $30 - $40.

Know What the Sale Prices Are--sometimes people will try to rip you off.  Really.

Make a Shopping List--this lets you budget--tells you what you can afford to buy, and keeps you from burning gas making trips for things you forgot.  I have a master grocery list (short version on that 1/16/12 post).

Check the Internet First--Find out which stores in your neighborhood are having the best sales today, which items you might want to add to your list.  There might even be online coupons for a few of your items.

Plan Menu--I don't, but some people swear by it.

Cook Large Meals and Freeze Leftovers--make you own TV dinners.  If you're bored on the weekend, you can also brown hamburger, cook chicken, cut up veggies, etc.

And Have a Little Fun--life is short.  Get a pizza once in a while.  Go to the zoo.

Please send me a comment if you can think of anything to add to the list!  One of my four regular readers must have one money-saving tip.  Don't be shy!

Not much happening here  Spent a lot of time this afternoon cleaning house.  The 'triplets' played house in our old chicken coop that I cleaned out years ago.  We use some of it for storage, and today I was taking some things out there.  The girls have got all sorts of old dishes, broken furniture, etc. out there.  I've painted the front of it--cats, butterflies, flowers, a puppy in a dog house, a snail, clouds, geese--a big 'kool-aid' smiley face on the door.  And a spider off on the side around the corner.  The swing set is right in front of it.  It's all shaded back there.  The path in the tiny woods that leaves our front yard ends right next to that chicken coop.

Across the yard from that is a very old two-story fuel tank.  I painted elephants on the tanks.  When the wind blows just right, you can hear them. :)

And now I'm off to (guess what) play the piano again.

Friday, May 4, 2012

I know I already posted once today....

....but I just found a blog post I wanted to link to:

It might be a better world if every time we were unfairly judgmental it resulted in our having to spend five minutes in the other person's shoes.

I'm sure I'd spend few unpleasant five-minute episodes myself, but I'd be willing to do it if it might result in a little self-improvement.

It's still 'snowing' here.  In keeping with our Hawaiian theme, we scrounged around and found some green & red grapes, two bananas, and plenty of cheddar cheese (there've been a few sales on cheese lately--in the event of a nuclear war, it might now be the last thing we run out of).   Add a box of toothpicks, and we had tiny shishkabobs.

Some of the girls have their swimsuits on now and they're out back playing with the hose.

Unfortunately, the ST: TNG marathon is almost over. :(  One child, sadly, is not a Trekkie.  I am so ashamed.  How could this have happened to me?  The next thing you know, she'll be going to Vera Bradley sales.


It's Snowing!

The weather has been beautiful these last few days.  I've never described my 'island' on this blog.  There is a tiny forest just a few feet from the north side of my house.  When I came here twenty years ago, I started the forest from a few maple and pine trees and one locust tree.  Well, locust trees are the dandelion of the tree world--twenty years later there are locust trees everywhere.  They are blooming now, large and small trees thick with bunches of little white flowers hanging like grapes.  They smell a little like honey.

The night before last I mowed the lawn and trimmed everything.  Even though we don't have any landscaping here, I still think it's very pretty.  I keep a path mowed through the woods, with a little stone angel at the entrance.  There's a little white fence along the woods in the front yard, and a bird bath, and bird feeders.  And now the white flower petals are falling.  I can look out the window at the forest, and every time a breeze blows there are petals falling everywhere. If you've ever seen the valley of Rivendell in the Lord of the Rings, it would remind you of that.  And there are birds and butterflies all over.

My husband's at guard for the next two days, so it's vacation time--no school, not a whole lot of housework, nice weather, and a Star Trek:  The Next Generation marathon today.  The twins are pretending we're in Hawaii this weekend, so last night I got out a ham.  When our tax refund came in, we bought a whole hog from the butcher, so we have several hams.  What's a luau without a roast pig?

Last night I took a nice long walk through the woods and along the beach and watched the sun set.

And I've got another book to read, after the one about Mormonism.  This one is about Kabbalah--a form of Jewish mysticism.

And now I've got to go call my mother before she starts wondering what happened to me.

Thursday, May 3, 2012

My Day in Court--the Consultative Exam

Well, my husband was able to take me to the 'consultative exam'--the appointment with a doctor chosen by Social Security.

I read a bit about these exams online--enough to discover that when you attend a consultative exam, the decision has already been made, and it wasn't in your favor.  This exam is basically just a formality.

There are websites that tell you how to dress and what to say and what not to say.  It's just like going to court.

It's almost funny.  I have my blood pressure taken, my hand strength tested, and my eyes checked, all of which is very nice, but none of which has anything to do with anything that is actually wrong with me.  The doctor does listen to my chest, but this is of course meaningless since I am not having an asthma attack today.  They can't count any medications or any symptoms unless I am taking or having them today.  (I don't even want to think about all the times I've seen doctors when I was actually having symptoms, only to be told that there wasn't really anything wrong with me.)

My husband almost loses his temper, and I don't blame him.  He's not as used to being treated like a low-life as I am.  No, that's really too harsh--they were pretty nice to me today.  But it's as if I'm on trial.  I have to prove my innocence.  I have been accused of being a lazy lying malingerer, and now I'm supposed to prove that I'm not.  But none of the evidence in my favor counts for me.  All the blood tests in the past, the pneumonia vaccine that didn't take--these don't count.  And I'm too independent, as is my husband, to blindly put faith in the professionals and trust that everything will be fine.  It's no good--I've known too many professionals.  I've dealt with too many remedial teachers and social workers.  I've been treated like crap too many times.  I don't trust anybody.

The test that showed prosopagnosia might count, but the test for CAPD doesn't, because that was when I was still in school and the records are gone.  

I don't have topographical agnosia because I've never been diagnosed.  How did I dare to look up all those neurological conditions on the internet ten years ago.  Just because people thought I was retarded, and I couldn't function in the world, and nobody could tell me why.  All three conditions (and autism) are related--read enough about one condition and you'll stumble on the other two.  But what business did I have trying to help myself out of desperation?

But none of those neurological problems are real until somebody with a piece of paper giving them permission to mete out diagnoses says they are real.

And the disease isn't real until some doctor contradicts the last doctor who said it wasn't, after diagnosing me and treating me for years.

And they're not interested in new evidence.  The simple blood test that would show a low antibody count is never done.  Another pneumonia vaccine isn't given.  And dismay is expressed that I would get pills over the internet to treat myself.   I try to explain that I don't have a choice, not when my husband has been laid off and I'm already asking relatives for money to pay the utility bills.  I just can't afford medical care.  I try to explain why I need to be treated for this disease, even if I have to do it myself.  I try to explain that I can't get the IVIG treatment because it costs more than my husband makes.  More trying to help myself.  More desperation.  I actually like being able to spend as much time as possible out of The Chair.  I don't want my children to remember a mother who could never go upstairs because she was never well enough, who spent all of her time in The Chair.

One day I was going to die in The Chair.  That's where it was heading before I got diagnosed.

I can't get help from any government agency.  I can't work.  The proofreading work-at-home business doesn't have enough clients, and no more clients seem to be forthcoming.  I can't get a job.  My husband is only working part-time and there is nothing I can do to help.

The doctor didn't make any suggestions as to what I can do about this situation.  That's because he's only human, and there is no solution to this.  I am going to have to try to accept that this is the way it is and it's never going to change.  It's hard to even say that.

It occurs to me that Captain Kirk would never have had to say it.  But he didn't go through 30+ years of this.  It's as if I've committed a sin by being the way I am, and every time it goes to court I'm found guilty again.  People in the community see me, and some believe I'm guilty.  Every time I meet anyone, I have to wonder when they're going to decide, and what the decision will be.

I am going to have to try to make the most out of my life the way it is.  Focus on playing the piano and taking care of the house and enjoying the lovely weather we're having and reading books and going out occasionally with my children.  And I have to stop worrying about what will happen if we can't pay our bills.  All I can do is juggle the overdue notices and call my parents for cash when somebody threatens to shut something off or take it back.  I'm finished trying to get help or get a job now.  It's gotten to the point where even other people think I should have given up some time ago.

And now I can wait and see if I have nightmares about hospitals tonight, or public school.

That doctor really wasn't a bad guy.  I think he might actually have liked to help.  But I think it would be really nice if I never had to see another doctor again as long as I live.

I'm going to go play the piano some more.

Tuesday, May 1, 2012


It's good to get out of the house once in a while.  The girls and I went to get bird food today, and then to Wal-mart, and then the Salvation Army, and then lunch (Chinese), and then the grocery store.  It's a long day, but as long as we've driven twenty minutes to get to that small city, we may as well run all the errands.  Gas is sure expensive. 

Going shopping is sometimes a bit of an adventure.  I found the city easily enough, but then the girls had to tell me which way it was to the bird food. Then after lunch I turned the wrong way and had a bit of trouble getting home.  I'm so glad our vehicle comes with a compass.  I'm also glad the girls are getting old enough to help me find my way around.  They even help me find things in stores--sometimes it takes me forever to locate something on all those shelves, or even find the right section in the store.  It's a nightmare if a store moves, or if they remodel.

I live in a big rectangle.  Maybe twenty miles across.  There's a major highway, a state line, a county line, and another major highway.  As long as I stay in there, I can only get so lost.  But the small city is south of the county line.  I used to always stay on one highway through town, but I was always getting lost when I left that road to go to the butcher's, so I've learned a new way to get there, and I've been trying to learn a couple of the main streets south of us.

And then when we get home, I've got all sorts of groceries and things to put away.  I don't usually think of it as a disability, but I'd sure have had a hard time getting groceries today without the girls' help.  It's not that I'm sick--I did some weed-pulling yesterday, and I hurt my back.  Once I started weeding, I just couldn't stop myself.  You'd think I would know better than to do this to myself, but it happens all the time.  I often try to split up a job like that into lots of little pieces--pulling up a couple dozen weeds a day for a month isn't as likely to hurt me as doing it all at once.  Anyway it was good to have the girls to lift bags of pet food and gallons of milk today.  I've been in a fair amount of pain off and on.  I hurt myself once this morning reaching all the way down to the dining room table.  That's just not good.

I paid one of my daughters a dollar apiece the day before yesterday to get big rocks from all over our 'island'--behind barns, by the garage, by the back door.  Yesterday I had the girls take turns placing them around our bird bath for a rock garden.  We already have a rock garden around our deck by our front door.  The reason we have so many rock gardens is that you can't kill a rock.  I don't have a green thumb.  I have the black thumb of death.  Now that I think of it, I think my substandard visual skills probably have something to do with this--I can't tell plants apart, so I don't often know which are weeds and which are plants.  I also might not recognize visual signs that the plants are doing well or doing badly.  Too bad--I'd love to fill the house with plants. 

At least I live in a house surrounded by nature.  Sometimes I see houses in the city and I wonder how people can stand to live like that. :)  Many people say they're happy there, and I have to believe it.  Growing up, my family lived right at the edge of town, and I used to look longingly across the open fields.  In fact, although it was forbidden, I started riding my bicycle out there as a teenager.  Probably lucky I was never attacked by a serial killer or something.

I love my island.

And I am not looking forward to the day after tomorrow.  It seems my husband is going to be able to take me to see the social security doctor after all.  I'd be stupid (I think) to pass up the opportunity after filling out all that paperwork.  But I hate seeing doctors.  I am so tired of trying to figure out how to convince some doctor that I have CVID.  The two 'gold standard' methods of diagnosis are the blood test showing a low antibody count and failing to develop immunity from a vaccine.  I've already got medical records showing these things.

Last time I saw a social security doctor, he didn't even bother taking another blood test.  All he tested was my blood pressure, which doesn't have anything to do with anything that's wrong with me.  At least I (probably) won't be sick Thursday.  Wait, what am I saying?  Maybe it would be better if I were!

It's just that it's nearly impossible to advocate for yourself when you're really sick.  It doesn't really matter--I haven't been able to convince people whether I'm sick or well.  I suppose I'm usually extremely sick by the time I drag myself to the doctor, and that's frightening.  It's scary to be fighting for air and to have people telling you you're not really sick at all.  You can't argue much because, after all, you're fighting for air.

I've been told that I'm suffering from clinical depression, that I have subconscious anxiety that manifests itself by causing breathing problems, that I'm angry and that's why I'm breathing so hard....

Maybe it's a sign of good mental health that I don't want to see another doctor again as long as I live.  Or maybe it's PTSD--one criterion is that the PTSD patient has to have believed that their life was in danger when they were being traumatized--being deprived of sufficient oxygen might qualify.  I've had nightmares about being trapped in hospitals.  And public schools.

And now that I've finished my do-it-yourself psychoanalysis, it's after dinner and there are chores to do and I haven't played the piano yet today.  Gotta go!