Sunday, November 15, 2015

Forwarding Address

This is where I went after this blog was finished.

Thursday, November 15, 2012

Hi!  My main purpose in posting is to point out that I've (finally) recorded my second Mazurka.  There's a link to the right, or you can just click here: .  This takes you to another page, where you have to close the box that pops up, and the click on 'download'.

The more Blogger tortures me with their new format, the better I get at using it.  Dropbox isn't a piece of pie either, but they're better than those of their competitors that I've tried.

Here's my latest favorite picture, from Bing:

It's Vienna, Austria.  I missed Bing pictures while they were gone--they'd fixed it so you couldn't download their pictures.  Well, I complained (more than once--I really do need to get a life), and presumably other people did as well, and now they're back. :)

Not much happening here.  Social Security is reviewing my case before sending it to a judge--did I mention this could take months or years?  I have an appointment soon with the family doctor, at which I will ask for a different blood test for CVID, a blood test to check to see if the pneumonia vaccination 'took', and a referral to somebody who can test for autism.  Yep, I'm going to go for that too.  I debated whether or not I should, but the consensus among people I've mentioned it to seems to be yes.  Hopefully my doctor will take my request seriously.  He's a good guy--he has no idea how to treat CVID, but he'll probably give me what I want--and it's not as if I'm asking for meds or surgery or something, just blood tests and a referral.  I've been told by the lawyer that I don't 'appear' autistic, but it's not uncommon for reasonably bright autistic people to learn to 'fake it' as they get older.

And my 11yo twin, the one who had an ear infection and went on an antibiotic, and then went on another antibiotic, and then yet again another?  I took her to an ENT (ear, nose, & throat) doctor yesterday (which I did manage to find even though I got lost on the way (even though it's next door to our family doctor)). She has something called "Eustachian Tube Dysfunction".  Not as serious as it sounds--she's just been put on a nasal spray.  But I've probably had it, too, a few years ago--I had the same earache that wouldn't go away after the infection cleared up.  I was told nothing was wrong and that I should just go home.  I spent months with a cotton ball in that ear because cold air (anything under 80 degrees) would make the pain worse.  My daughter is having the same problem, having to keep the ear covered.

And I discovered that this doctor tests for APD (Auditory Processing Disorder, the hearing problem that I was diagnosed with in high school).  I've made appointments for myself and all four daughters.  I'm suspecting that my 'ear infection girl' is the one of my children that might have this.  I've always said that she can't follow spoken directions if they're given in sets of one or more.  I've wondered from time to time if my eldest has it--I don't think so, though.

This might give Social Security something else to think about.  The lawyer didn't seem to take it very seriously, but I've already been diagnosed with prosopagnosia, and if I get the APD as well, that might help a lot.  Especially if I get the autism diagnosis.  And even if I don't get Social Security, if I end up on welfare in a works program perhaps they'd have to make accommodations.  I also have the tests from the Social Security doctor that show that I have a crummy visual memory.  My plan is to just keep piling it on.

Of course, when I get sick and can't breath, none of that other stuff matters all that much.

Anyway, I had a good time with the girls yesterday.  After spending a couple of hours at the ENT (and before having to go pick up the prescription) we went to Steak n Shake.  It was good--we all ordered off the value menu--chicken fingers and cheeseburgers all around--and ordered water.  And we all got milkshakes.  That's fun--tall glass glasses filled with pink or green or chocolate brown, topped with whipped cream and cherries.  I don't get paid anything for this advertisement. :)

I don't want to jinx it, but I think it's just possible that my girls are growing up a little bit, to the point where they're not bickering quite so much.  Just in time to keep me from having to pick an illegal substance to start abusing.  One girl in particular (I won't name names, I'll just look at the party and whistle) has been especially hard to deal with, but she may be starting to grow out of it.  I'm starting to get my hopes up that just maybe she'll never be charged with assault and battery.  And neither will I.

Well, back to housework and piano playing, and I have to call my mother soon.  She and my father have colds this week, and I'm avoiding them like, well, like the plague.  One little cold, and this might turn into a repeat of last  November.


Saturday, October 20, 2012

I don't think it's depression, I've just given up

The girls are still at a sleepover this morning, and my husband had someplace to go, so I had the house all to myself this morning.  I'd turned off my alarm, but I'm so used to waking up at six-something that I did it again anyway.

I'd planned to try to record my second mazurka this morning, but I was (happily) distracted by the Blues Brothers movie on TV.  I've seen it before, but it's worth watching again.  A few minutes after it was over, though, my husband came home.  I was still in my pjs, thinking I'd have plenty of time to get dressed and do chores after the movie.

My husband had a pancake breakfast this morning.  He'd asked if I wanted to go, but I'd said 'no'.  I don't think it's depression, I've just given up.  My kids weren't going to be there, my parents weren't going to be there, and my husband would probably end up in the kitchen.  I'd be in a big room full of strangers and people I know, and I wouldn't know which were which.  And I'm tired.  Of dealing with the people from our old church and the people from the nearby small town who think I'm lazy and I should just get up off my behind and get a job.  Most of them I haven't seen in a year, or even a few years.  One person from the church wrote me once after we left.  Two still occasionally chat with me on facebook.

When I think about it, I ought to be depressed.  I try not to let any of this get to me.

At least I still have internet access, at least for the moment.

Sometimes I miss being around people, but I've gotten used to this.  I've had forty-seven years to practice getting used to it.  I remember feeling terribly lonely in public school, and afterwards as an unemployed young adult.  But church was the last straw.  I miss church once in a while.  I have a spiritual hunger that church even tried to fulfill every once in a while.  But it was getting unpleasant toward the end, with people deciding  some vitamins would perk me right up so I could go back to work.

Maybe what I need is to go find some people who are my own kind.  I think I'm an alien.  I keep looking up and waiting for the spaceship, but it never comes.

I just got the news that the kids will be staying at their friends' house 'til tomorrow.  Woohoo!  Maybe tomorrow, if I get around to it, I'll be able to record that mazurka while everybody's at church.  Unless there's a good movie on....


Friday, October 19, 2012

Tuesday, October 9, 2012

Final Post?

I've been absent for a while now--sorry about that, I've just been unable to keep blogging about illness and poverty and government screw-ups.  It was a bit depressing to begin with, but with the prospect of losing our home looming over our heads, I just haven't been able to bring myself to keep thinking about it.  Maybe this is the kind of thing denial was invented for--worrying every day can't be good for anybody.

I may soon be absent for a longer while, though.  I was afraid this day was coming--our financial situation has gotten to the point where we're probably going to cancel our internet service.

Being homebound is bad enough, but this will mostly cut me off from the outside world.  It's a good thing that I hoard books.  My husband is still unable to find a full-time job--all he has is a part-time manual labor job that is possibly not going to be there when the weather turns cold.  Being in the National Guard is turning out to be a hindrance--interviewers are not supposed to ask about his Guard status by law, but they are all asking anyway.  And nobody wants to hire somebody who could be deployed some day.  Getting a college degree hasn't helped him at all, either.

We are still getting no government assistance, and no charitable assistance, because I can't enter the work program.  At some point I may be forced to try, which would mean asking my parents to babysit and homeschool my four children full-time (and my mother is in a wheelchair with rheumatoid arthritis--my father is seventy now and retired so he can take care of my mother).  Then we would have to ask the people at my husband's church to drive me to the work program, and drive me to all the interviews.  I'm not sure they'd even be willing to do that much driving.  And then I'd get sick repeatedly--it gets worse when I'm around lots of people and forcing myself to work no matter how sick I get.  Not to mention losing jobs because I can't hear, and can't remember what I see.  I don't think the work program is going to last long for me.

My parents have said they can't keep helping us forever.  I'm afraid this is going to affect my relationship with them.  Poverty affects one's relationship with everybody sooner or later.  And at some point we're going to have to move in with them.  I don't see any options for improving this situation.  Today I posted on facebook and on message boards, coming 'out of the closet' about just how bad this is getting.

I need a work-at-home job.  My husband needs a job that can support six people.  I need to get diagnosed as disabled, so we can get the help we need.

I need to get diagnosed.

In November I have another appointment where we'll see if the pneumonia shot failed.  The CVID test came back negative, but I'm not sure it was even the right test.  Boy, do I need a specialist who knows what they're doing.

I'm probably going to try to get diagnosed with autism, also.  Anything to try to get people to take how much trouble I am in seriously.  It's not really the autism, I think, that cause most of my trouble.  Well, of course when you can't breathe nothing else really matters all that much.  But it's the failure to be able to hear, and remember things I see, that holds me back.  However, autism is something that people have heard of.  As a disabled person, you can never overestimate the value of having a condition that people have heard of.  "Oh, you're blind.  Well, of course you can't drive."  Your capabilities are fairly obvious.  As out of it as I am when I can't hear, and can't recognize people, it would make more sense to people if they knew about the autism.

Well, I'm off to see if any more people have responded to any of my posts.  I don't suppose any of them will know where my husband can get a decent job.


Friday, September 21, 2012

Is It Bedtime Yet?

Well, I've recovered from the pneumonia vaccination, only to get hit with a four-day 'migrainy' episode.  It's my 'regularly scheduled' (monthly) migraine, but this one has been the Migraine From Hell.  The first three days I just 'tried' to get it.  This morning I finally succeeded.  I woke up first thing with an out-of-control full-blown migraine.  Usually I can catch them before they get that bad.  Not this time.

I spent most of the day, until around dinner time, anticipating my next dose of advil.  I know I'm not supposed to take four advil at a time, but that's what it takes to keep it under control.  That and huge amounts of diet caffeinated soda.  I spent a lot of time zoned out in front of the computer (rediscovering the joy of Word Bubble at Lumosity--what is it with me and 'bubbles' anyway?), the first two liters of caffeine being enough to keep me vertical.  I haven't played the piano in days--the migraine has had me too tired to play the piano on top of keeping the household under control.

I've had a lot of trouble with my left eye--my vision kept winking in and out.

Meanwhile, I've gotten my blood test result from the doctor--and it was negative.  After further investigation, it looks like I got the wrong, or at least an insufficient, test.  The doctor was happy--I don't have allergies (after keeping cooped up in the house for a month because of the sneezing during hay fever season) and I don't have an immune deficiency.  He was telling me this while I was on antibiotics for a double ear and sinus infection.  In September.  Congratulations to me, I am well.

Maybe I'll fail to respond to the pneumonia vaccine.  Maybe further testing (a little research and questioning an online CVID group has turned up the name of the test I need to ask for) will show I'm sick.  Maybe the repeated infections will eventually convince him.  But I am seriously bummed out about this.  Maybe a positive test result would have convinced the food stamp people, and eventually even Social Security.  Maybe this winter my husband's job will dry up and it would have been just him going through the work program.  I won't last long before getting sick, and if by some miracle I don't get sick right away, I'll never be able to drive myself to the interviews they'll insist upon.

This week I had to buy gas for the van ten dollars at a time.  My two older girls went roller skating and had to pay for it themselves.  I couldn't get a lot of things at the grocery store.  Fortunately my disaster preparedness keeps us stocked up.  But it's frustrating when a clerk at a gas station wonders out loud why we're only buying ten dollars worth of gas.

I just keep trying not to think about it.

We were lucky--my sister's package came today.  Some cash to try to get through the month with.  And some little presents.  She spoils us.

And now I have things to do--I've fallen a bit behind this week, and today in particular.  It was an effort to be proud of, my keeping up with anything today.  I'm so glad the girls all have chores to do--I would have hated having to do it all by myself today.

Good night.

Saturday, September 15, 2012

100 and Falling

OK, my temp went up to 103 last night.  Sometime during the night it finally started to fall.  It's the next evening now, and my temp is 100.  I've even lost the desire to be wrapped up in a blanket.  I'm exhausted, though--this was one of those nights where you wake up and think that maybe it would have been more restful to have stayed awake all night.  There was no comfortable position with that arm.

The doctor on call for my doctor didn't think this was serious.  I would think a 103-degree reaction to a vaccine would be scary, even without CVID thrown in.  99 degrees, maybe 100, ignore it and hope it goes away.  But 103 and still rising....I was afraid to go to bed last night, for fear the temp would continue to rise and nobody would be there to notice if I got into real trouble.

My arm is getting to the point where I can walk across the room without hurting it.  Maybe tomorrow I'll be able to put on deodorant, brush my teeth, and fix my hair.  This morning I couldn't open a pill bottle or pour myself a drink, or get breakfast.  I'm still wearing that same shirt.  There are an amazing number of things you can't do without both arms.  You especially can't open a package of anything.

I don't think I want any more vaccinations.

I'm tired so I'm going to go now....