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:  https://www.dropbox.com/s/dq0x4x6iq5hm23n/Mazurka%20No.%202%20Audio%20File.wma?m .  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.

Bye!





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....

Bye!

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.

Bye.

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....

Friday, September 14, 2012

Children's Medicaid is Cancelled Because of National Guard--Nine Days Is Not Long Enough To Process Faxed Paperwork

Well, they cancelled the kids' Medicaid tonight--Friday night.  The paperwork was faxed Wednesday the fifth--nine days ago.  They don't know they have it yet, so the Medicaid's cancelled, and we'll have to apply from scratch all over again.  Tomorrow morning I get to haul my 102-degree self out of bed with my one functioning arm and collect birth certificates and social security cards and pay stubs and all and mail it to the FSSA--the only way to get it there in time, I have learned over the years, is to send it before they ask for it.  Maybe a few times.  I have a list of everything they ask for.

I feel horrible, but maybe if I start tonight I can get it in the mail before the mail goes out tomorrow morning.  Wow.

Ow. Ow ow ow.

OK, I'm sick and bored.

And I have a temp of 102.  We are in dangerous territory now--much higher and I will stop making however much sense I usually do.

Yesterday I went to the doctor.  I am bummed.  The blood test said I do NOT have CVID.  In spite of the fact that I've had it for years and nobody's ever been cured.  In spite of the fact that I am currently on antibiotics for a double sinus and ear infection when the weather's beautiful outside.  In spite of all the sinus and ear infections and pneumonias I had this winter.

Here I am in the chair again.

I am trying to make the best of it.  I'll do some clicking to donate and play some Bubble Blitz and see if I can get my brain to maybe let me write a fan-fiction or an e-book--two ideas I've been toying with lately.

My arm really hurts.  It's red and swollen.  I've finally given up sitting at the dining table because I'm freezing and no way can I put on a sweater.  Sitting here with a blankie immediately convinced everyone I was sick--I generally HATE blankies.  Unless it's subzero out and the lights have gone out, I am miserable in a blankie.  My mom put feet pajamas on me once.  Only once.  I overheated and threw up.

All this because yesterday I asked the doctor for a pneumonia vaccine.  I'm hoping eventually he'll believe that my immune system is faulty.  So my kindly doctor who usually gives me whatever I ask for (not that I'm very demanding) authorized this.  And now his office says to stay home and take tylenol.  I am dizzy and nauseous.  At least my temp seems to be plateauing.  Wait, I'll take my temp.

Some of the symptoms of a vaccine reaction are sore arm, swelling....the more serious ones (maybe my doctor's staff needs to look this up online?) are fever, dizziness, and, get this, irritability.  Seriously, I feel like crap and I can't use my arm.  I'll try not to be too cranky.

I have Deb World (just like Disney World but more fun) set up now--laptop, folding chair to put laptop on so I can get out of the chair without calling for an assistant, blankie, thermometer, cell phone.  My temp is 101.6.  It's too soon to tell, but I can only hope this will pass.  Or not--if I get really sick will it help prove how sick I am?

OK, now I'm confused again.  It's just that I've occasionally had a spell of good health, and this would be a crummy time for that to happen now.  Confused.

Oh, and here's a picture--this is an incredible picture:

 
 
It's from George Takei on Facebook.  You know what it is?  It's SAND.  Magnified 250x.  Really.
 
Cool, huh?
 


Cliffhanger?

I got the pneumonia vax yesterday and my arm really hurts.  Ow.  I also have a temp that is 101.5 and going up.  I'm waiting to hear back from the doctor....

Wednesday, September 12, 2012

"I have to admit feeling a twang of glee upon hearing that you had a double ear infection..."

That's what my sister wrote me today.  My sister has a dark sense of humor.  We're just two fruits that fell from the same tree and landed pretty close together.

This is what we've been hoping for--evidence of and immune deficiency.  I mean, who over twelve gets a double ear infection when it's sunny and warm outside, and anyway they've been afraid to set foot outside because the pollen might get them.

My father used to get ear infections as an adult when he worked outside.

Monday night I started antibiotics, and one of my eleven-year-old twins took her last one.  Now her ear infection is back.  I generally don't overreact to things like this.  She's always been healthy.  Maybe she'll just take after my father with the ear infection thing.

CVID can hit at any age.

I have a doctor's appointment tomorrow to discuss my blood test.  The doctor's office wouldn't let another of my kids come in before, because she had to have an 'intake' appointment first, which couldn't be for weeks.  But when my husband called, they said, 'Sure, bring her in tomorrow.'

Must be nice.  At least she doesn't have to go back to the emergency room.

And this could be me in eight days.  I'd actually asked the doctor to give me a longer course of antibiotics.  Well, let's look on the bright side--if I show up with another infection, that'll make me look even better to the people who don't want to believe I'm sick.

If my CVID test really is negative, I'll ask for another pneumonia vax.  Either my body will fail to make any immunity to the pneumonia, which is a strong diagnostic criterion for CVID, or at least maybe I won't be getting pneumonia this winter.  It's a no-lose proposition.

And the Medicaid people still don't know they have our paperwork.  It was faxed a week ago today.

My 16yo and I are home alone, and we're watching 'The Grey'.  I'd researched the movie first, and already decided the three younger girls wouldn't be seeing it.  It does seem to be a bit predictable.    It needs a couple of surprises.  I like Liam Neeson.  Not like, just like. :)

I tried to have an asthma attack this morning, but I managed to rest a bit and haven't had trouble since.  Don't know if that's good news or bad news.

Think I'll mosey on over to Facebook now and see what's up.  'Night.

P.S.  Just saw the end of the movie.  That Sucked.



Happy Birthday!

(This was supposed to publish last week--don't know why it didn't.)


Happy Birthday to Me!



Here's a purply picture from Aurora Borealis:




Maybe somewhere out there there's a planet that looks like this. :)



Here's a picture from APOD (Astronomy Picture of the Day):

 
 
It's the Pleiadies--the Seven Sisters.
 
 
 
And here's my favorite, the Picture of the Day Award Recipient, also from Aurora Borealis:
 
 



It's Iceland.



I've celebrated my birthday by mowing the lawn (since it rained recently) and trimming the weeds.  And the sneezing.  I feel better now--it rained really hard here (I was rushing to finish before the black ribbon of cloud arrived), which washed a lot of the pollen out of the air.  I've gotten ready to go out tomorrow--we're going to the computer store, the post office to pick up prednisone for me and drop off a 'Hazel box' for my niece  (made up the box today), the Salvation Army--twins really need some clothes--and grocery shopping (cleaned the fridge today--there's never a better time than right before shopping--and made a list).  Maybe we'll get some Chinese food while we're out.

And my parents are taking us out for dinner tonight. :)






Monday, September 10, 2012

It's a Double Ear Infection!

Guess what!  I've been too sick to feel like posting since Friday.  I went to bed feeling fine Saturday night, other than the same hay fever that's been bothering me for a month, and then in the middle of the night I was sick.  I woke up with a raging sinus infection on the left side.  Then my ear started popping on that same side.  By evening I had to run to the bathroom every fifteen minutes--probably a urinary tract infection.

So Monday morning I bit down on that bullet and did something I really did not want to do.  I called the doctor.

I've been having a hard time with this.  I've been told I'm a hypochondriac so many times that my blood pressure goes way up every time I set foot in a doctor's office. (Except this time--I think I was just too sick to give a damn where I was.)  I had nightmares last night.

But I was really lucky.  The doctor's staff actually let me come in today even though I didn't have an appointment.  I was sure to stress that I have a genetic immune deficiency and that infections tend to get out of control quickly.  I was on hold for a long time--I wonder if the doctor was consulted with.

I'm happy I was able to find the doctor's office, with my handy map on the seat next to me.  I'm not sure I was really well enough to drive.

Anyway I saw the doctor, but, surprise, it wasn't my regular doctor.  I was worried.  Especially when we started out the conversation with her stating twice that I had 'cold symptoms'.  It's not easy explaining to people--I am a serious connoisseur of infections, and I pretty much know when I have one.  The blinding pain on one side of my face was a good clue.  But she was really nice.  I think I made a good first impression.

It helped that I had ear infections in both ears.  So my claim to an out-of-control sinus infection was probably believable.  This is good--the first time we met, I claimed to be sick, and then I really was.

Only a really sick person, or a close friend or relative who's been dealing with a sick person, would understand my triumphant joy at hearing that I have a double ear infection.

So I have antibiotics, an antihistamine/decongestant combo, and a nasal spray.  Maybe I won't be sick for a month.  That would be lovely.

The bad news was that my blood test turned up negative.  We'll probably have to do it again--my body being a mass of infection may have thrown off my antibody count--especially since I'm actually running a fever, which means my body is trying to make an attempt at thinking about mounting some kind of an immune response to this.

The test also showed that I don't have hay fever--not sure how much confidence I have in those tests.

And then I found my way back home.

We're watching 'I, Robot'--fantastic movie.  I've seen it before.  Will Smith runs through the house as it's being demolished by a robot, pulls out his gun and shoots out the door, scoops up the cat, and escapes in the nick of time.  My hero!


Friday, September 7, 2012

The Worst Thing About Being Poor

http://www.ihatemylife.us/story.html

Here is the story of a man who experienced homelessness.  Actually, 'experienced' doesn't seem to do a thing like homelessness justice.  Anyway, this man wasn't abusing substances or anything like that.  And he eventually managed to get another job and pull himself back out of homelessness.

Here is a quote from his website:  "The worst part about being homeless wasn’t living on the streets or being hungry, it was having my friends, or the people I thought were my friends, turn their backs on me."

As I'm writing this, I'm sitting on my sofa in front of the TV, having had frozen pizza and potato chips and sheet cake for dinner (small 'party' with just me and my girls--husband has guard duty this weekend).  My stuff is all safely ensconced under my roof, and I'll in all probability be sleeping here tonight, just like I have almost every night for many years now. 

Life is not perfect.  But it seems horrible that somebody would say that the worst thing about being homeless wouldn't be losing most or all of your 'stuff', or sleeping in less than comfortable surroundings, or going hungry, or not being able to bathe regularly, but that the worst thing would be the abandonment.

This is what it's like to be poor--except worse, I'm sure.  If I have to be alone, I think I'd prefer to be alone with my frozen pizza in my comfy house.  I have no idea what it's like to be homeless.  Don't want to know.  But I think a lot of poor people would understand what this gentleman is talking about.

It's hard, just being poor (not homeless), and watching the people in your life as they start disapproving of you and begin to distance themselves from you, finally to disappear from your life altogether.  Friends think they see a lack of motivation, or gross financial mismanagement, as they build careers, go on vacations, eat in nice restaurants, buy new homes and new cars and nice clothes.  You no longer have anything in common with them.  If you're lucky, only some of your family disappears.  You're now the 'lazy white trash' at reunions and holidays.  Clerks in stores, nurses in doctors' offices, and social workers in government agencies don't treat you the same way, because you haven't had your hair done or bought decent shoes, or because you're buying the cheapest items in the store, or because your children are on medicaid, or because you're unemployed.  One day you realize you're not all that welcome at church, and after several attempts at finding a better church, you realize you're not welcome at any of them.  You start to spend Sundays alone.

Then the next thing you know, there's a holiday, and you spend that alone, too.  Then there's another one.  And another one.  One day, you realize it's been going on for years.

And that is indeed the worst thing about being poor.


Tuesday, September 4, 2012

Medicaid Paperwork for the Employer

This morning I had to send my husband off to work with Medicaid paperwork for his employer to fill out.  His employer is the head of a two-man business--my husband is the other man.

This paperwork is due Sunday.  I doubt it's going to be processed in time to keep our Medicaid from being cancelled--a tired old refrain on this blog.  They already have our tax returns, and pay stubs from the last couple of months.  Now they'd like a record of my husband's earnings in August and September.  You must understand, these forms were mailed on August 30.

Oh, I've finally figured it out.  Screw the copy machine and the fax machine, what I really need is a time machine.  Forms not turned in on time?  Just go back three months and mail them before they're even asked for!



It's embarrassing being poor.  My husband gets to tell his boss that our children are on Medicaid.  You know, some people look down on people who get government assistance.  They see their tax dollars being paid to support people who just, in their opinion, don't work hard enough.  It might be easy for some employer, who (and I don't know anything about my husband's boss, really--I've only met him once) may never have been poor, to look at our family and wonder why my husband doesn't work harder, and why I don't work, and why we don't just purchase some insurance for our children.

My husband was willing to work full time, go to school in the evenings, and spend a weekend once a month in the National Guard.  But now that he's graduated, there's no job out there, except this one, which doesn't pay very well and only offers part-time hours.  So he's making maybe 200-300 a week--way, way below the poverty limit for a family.  This job offers no insurance.  The Guard does, but with only their insurance, we could never take our children to the dentist, and my daughter's recent trip to the hospital with an ear infection could easily have cost us a couple of week's pay, which we don't have because we just paid our overdue electric bill and got plates for our two used vehicles.  Today I get to ask my parents' help with another bill, because there's nothing left.

I just hope that this paperwork doesn't cause my husband trouble at work.  I've been in the workplace in the past, and I know how some bosses can be.  Especially when you're working at the bottom of the food chain.  I actually had an employer many years ago, at a part-time, minimum wage job, insist that I should have health insurance more than once.  Of course, this company didn't offer it.

And my husband has had employers in the past state that we could make ends meet if only I would work.  We could pay half his paycheck for the company's insurance plan if only I were bringing in another paycheck.

Not to mention the cold, hard fact that it's best not to let employers know how desperate your financial situation is--how desperately you need that job.

It's too bad that the FSSA, in their quest to make sure that we're working as hard as we're supposed to be, has to do things that might actually harm my husband's ability to bring in a paycheck.

Especially since we probably won't make this deadline and we may well have to ask for the very same paperwork again in a couple of weeks.



Sunday, September 2, 2012

I Want To Be Sick!!!

O.K.

I'm really confused.

I've got my terrific sister offering to help with all the deductibles/co-pays/etc. for medical care so I can get some documentation of my CVID so I can get back on Social Security & Medicare & maybe even Medicaid & food stamps.  I probably shouldn't get my hopes up, but I am virtuously not treating myself for infections now.  So I almost got an ear infection yesterday, but it apparently cleared up by itself.  If it were January right now I'd probably be pretty sick. (In fact, I'm so often sick in January that it's a good bet anyway.)  So this morning I tried to get a sinus infection.  I was in pain.  But it's apparently cleared up on its own as well, except the the ache in my top front teeth.  Wonderful, hot, humid weather is the best thing in the world for my health.

So here's what I'm confused about--do I root for getting sicker, or do I root for not getting sicker?

It seems kind of ghastly to be hoping I'll end up in the ER with an infection of some kind or other.  It seem idiotic not to take the preventative antibiotics.  And I worry about who will take care of my kids, and my pets, and my house, if I find myself in the hospital.  Hopefully the kids are all old enough to take care of themselves, and the pets, and the house.

And I worry that the doctors at the ER will think I'm a hypochondriac (again), recommend cough syrup and send me home.  I'm thinking of asking my general practitioner to write a letter explaining my condition to ER personnel.  Other CVID'ers have done it.  Something explaining how an ear infection or a sinus infection or a little cough needs to be treated because I only have hours before the infection rages out of control.  And about how my normal body temperature might be a sign that my body isn't fighting the infection at all.  And maybe something thrown in about my asthma that doesn't respond to any treatment besides IV steroids.  Honestly, I'm going to have PTSD about going to the hospital.

Seriously, I've had nightmares.

Try as I might, I just can't hope I'll get sick.

Come to think of it, I am a lousy hypochondriac.  I don't want any attention at all.

But we really need the government benefits.  My parents are lovely people--I think I've lucked out in the parents & siblings part of life--but I don't want to live with them.  I want to keep my house.  And I'm tired of taking money from my family.  And one day, who knows when, I'm going to get really sick and not be able to treat it myself with antibiotics and prednisone from the Philippines.  And when that happens, it would be nice to have Medicaid so I can get some decent medical care.

It's been a long rainy weekend, with a bit of in-law trouble and medicaid (for the kids) trouble, and a huge overdue electric bill that gobbled up most of the paycheck my husband finally got.  And no Labor day vacation or parties for us.  And this horrible hay fever.  It could be worse--at least the lights are on.



I've been cleaning house a lot since yesterday morning.  I'm tired of cleaning now.  I've been playing the piano some.  I seriously do need to get OUT OF THE HOUSE.  I haven't had cabin fever this bad since this winter when I was too sick to set foot outside.  I need to find something interesting to do.  Excuse me....





Saturday, September 1, 2012

A-choo!

I think my daughter is going to be fine.  The ear infection must have been serious enough--they gave her antibiotics at the ER.

And now I'm starting to wonder if it'll be my turn next.  My ears are popping a little.  And I'm not going to take antibiotics, because I need to go see a doctor and get a record of my illness.  It does seem a little stupid to be letting an infection happen on purpose.

And Medicaid has sent a form to be filled out by 'EMPLOYER'.  They simply refuse to admit that I've repeatedly told them that my husband has a different job than the one he had last year, and who his current employer is.  It must have finally come to their attention, though, or else why the blank form?

It was sent on August 30.  It arrived today--Saturday.  My husband will have to take it to his boss, who he won't see until Tuesday.  So I can mail the form on Wednesday.  The FSSA has to receive it by (counting on imaginary fingers) the ninth.  A week from Sunday.  Does it matter if they're closed?  Can the form be mailed on Wednesday and get there by Friday?

It hardly matters--it still has to be processed!

And they always refuse to tell me if my kids are covered or not.



I really, really want to go outside.  Really.  I want out.

If it would just rain already, maybe I could make short trips.  It's the little things that get me--like pollen and bacteria.  And the brains at the FSSA.


Friday, August 31, 2012

No-Good Under-Insured Freeloaders

It's a little late for me to be blogging.  One of the 11yo twins is on her way to the emergency room with an ear infection.  This is the first time she's been to a doctor sick since 9/10/01 when she was six months old and had to have a hernia repair.  I remember the date because it was the day before 9/11.

She's had terrible hay fever this week.  So have I.

I worry about my 'little girl'.  And I worry about her being taken seriously at the ER.  I didn't want to ignore this and have her suffer some kind of damage.  But our family has had a bad track record with this sort of thing--I'm afraid the doctor won't take it seriously and then we'll end up taking her in again the next day.  I've given kids tylenol for an ear infection before, but my motherly spider-sense tells me this is a bad one.

And then....

Our medicaid is due to have been cancelled by now.

We haven't been notified yet.  But we certainly don't have the money to pay for this.  Thank heavens hospitals in this country have to treat you whether you can pay or not.  Yep, we could once again be some of those 'freeloaders' I've read about in the news.  My husband could be in the ER right now finding out that the medicaid card is worthless.  We do have tricare, but there would be plenty left over after they pay their share.

And I'll just try not to worry about me being held responsible for my child's illness.  The general consensus among half the population seems to be that I should never let any of my children become sick.  Fortunately, my girls have been mostly extremely healthy.  One was sick off and on for a few years, but she seems to have mostly grown out of it.  We've had, I think, three or four stitches a total of three times.  So we've been lucky.  I could even take some of the credit for trying to provide a decently clean environment with regular baths and three meals a day and vitamins. 

This has been the worst day for hay fever this year.  I'm tired, but I probably won't go to bed until my 'baby' is back. 

My husband wants to invite somebody (he doesn't seem to care who lol) over this weekend for barbecue, and I've had to insist that I'll be staying inside if that happens.  I was out for only a couple of minutes this morning, and I was sick for three hours afterwards.  I'm not thrilled at the prospect of visitors when our yard hasn't been mowed for maybe three weeks, either.  It's been growing like it's springtime, and I haven't run the weed whacker or pulled a weed.  I send the kids out to get the mail.  I stay inside.

I love to be outdoors.  It's no wonder I like autumn--I get to go back out.

And I need to realize that there are two kinds of people in this world--people who would judge me for the longish grass with a few dandelion puffs sticking up, and people who wouldn't mind me putting my health somewhere near the top of my priority list.  These days I am feeling a strong urge to avoid people in that first group.  I've met too many of them already.

Not to be melodramatic, but, yes, I could easily end up in the hospital if I tried to mow right now, and how stupid would that be?  More freeloading.  Not to mention how much it simply sucks to be sick.  Antihistamines don't touch this.



Well, we've had school every day this week.  I've cleaned, I've exercised, I've played the piano, and one of these days I'll break a million on Bubble Blitz.

The second movement of my sonata is coming along.  I'd thought I was almost finished, and then the next thing I knew I was dismantling it and trying to shuffle the pieces around until they fit.  I did everything except cut pieces out of the sheet music and lay them all over the table.  The thought did cross my mind.  But I think I've just about got it now.  And I'm liking the beginning of the third movement.

I'm tired.  I hope I'm at least making as much sense as I usually do.  Think I'll go play more Bubble Blitz.  See ya!

Oh, wait, here's my newest Desktop Pic Award--the picture is on my laptop right now.  This one is also from Aurora Borealis--one of my recent favorite places to get pics, especially since Bing has apparently fixed is so that I can't 'get' their daily pictures any more.  Boo!  Hiss!  :(  Anyway, here it is.  Good Night Moon.








Sunday, August 26, 2012

I am NOT a ghoul!

Well, I'm drinking up some of that diet Dew today.  Everybody left for church, and I was going to finally record some piano music for this blog, but instead I found myself parked in front of the Weather Channel playing Bubble Blitz.  There's a hurricane, you know.  Jonas Quinn and I would be happy sitting in a room somewhere for a few days watching the hurricane.  In some women's fantasies, Jonas Quinn would be shirtless.  In mine, the hurricane has just been declared a cat 5. lol

So anyway, I kinda wondered why I was feeling so lazy this morning.  And then the migraine hit.  Fatigue is one of the symptoms that one is coming.  I get them every month--regularly.  Maybe I would have seen it coming if it weren't for the foggy brain that comes with it.  So it's Advil and Dew today--I'm not feeling great, but I'm functional.  I've been playing some piano (and wanting to play everything pianissimo) and going through stuff upstairs.  I am honestly trying to clean up around here--but we've been out of the house a lot lately.

Here's an article that interested me:  http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=1&pagewanted=all .  It makes my life make more sense, the idea that immune disorders and autism are related.  My mother has rheumatoid arthritis--it raised my odds of having autism.

I'm playing SongPop with my 13yo right now.  The twins are out in the camper (their new home lately) and the oldest went with Dad to a church youth meeting.

The twins made chocolate chip cookies earlier and left the batter bowl next to the computer.  I must tell them not to do that in the future.  It's just like having unprotected sex--if I have food next to the computer, I am planning to eat it all.

The blog is back!  One of my favorite all-time blogs:  http://wwwwhitechinese.blogspot.com/ .  This is the blog I used to take a virtual vacation while I was sick this winter.  I am really excited!  It's such a different culture--it's fascinating to read about.

Cool video on TV of trees being whipped by the wind and rain.  And New Orleans has now declared a state of emergency.  So has Mobile.

You know, that storm we had this summer had 90+ mph winds.  Only for a short time.  That was very destructive.

I've tried to tell my girls that when they have homes of their own they should prepare for a week with no electricity and no outside help.  Everybody should.  I was just reading an article the other day that said that one thing many people neglect in their planning is water.  Do you have a week's worth of water stored?  I have six dozen 2-liter bottles of water ready to go.

And we're probably going to have some rain tonight, which the crops could certainly use.

And New Orleans is not going to open shelters.  My 13yo has just accused me of being entertained by other people's misfortune--not the shelter thing, the whole hurricane.

Well, it's time to go scrounge up some dinner.  Good luck to anyone reading this down south.  After this summer, I do have some understanding--every storm after that, we were on high alert here, and that wasn't any fun at all.  I love a good disaster flick, but I don't really want anybody to get hurt.  I'd stop it if I could.

Bet that would pay well, too.

G'night.



Friday, August 24, 2012

A Waltz Inspired by Chopin

Hey!

We netflixed (it's a verb if I say it is) the Six Million Dollar Man this week.  TV sure used to be slow.

I've put the sheet music for my first waltz and the first movement of my sonata to the right.  One of these days when I have some peace and quiet I'll have to record the other two pieces.  I'm still working on the second sonata movement.

I finally got the paperwork to send to my husband's former employer today.  He hasn't worked there for eight months, but the FSSA wants them to fill out another form.  It's Friday today, and the form has to be back to them on Wednesday, or else.

And nothing else much is going on here, so I'll just go quietly....


Thursday, August 23, 2012

Some More Picture I Liked...Aurora Borealis

Here is my Picture of the Day:

 
This was on my desktop for a while.  It's from 'Aurora Borealis'  https://www.facebook.com/AuroraChet.Apichet?ref=stream .  And here's another Picture of the Day:
 
 
 
It's my current desktop pic.
 

How about another one from 'Aurora Borealis':
 
 
And another one:
 
 
And another one (from a fb group I belong to)--I sent a copy of this to my mother, who has Rheumatoid Arthritis:
 
 
 
 
Not much else happening here.  Our Medicaid paperwork is due this coming Wednesday, and we haven't received one of the forms yet, which has to be mailed by us to someone else and then faxed (hopefully the same day?) to the FSSA.  None of which matters anyway because it will take them a month to process the rest of the stuff once they get it.
 
It's been a busy day--homeschooling, catching up on chores after having been so busy lately, playing some piano, printing out a bunch of English and spelling worksheets.
 
Good night. :)



Tuesday, August 21, 2012

The Indiana FSSA thinks the National Guard is a New Job Every Month

This morning I drove to my parents' house, because at my rural house the phone signal isn't strong enough to continue a long, unbroken conversation.  I called the FSSA (the people who handle Medicaid, food stamps and welfare) from there.

First I learned that their computer system couldn't find our file.  Then I spoke to Julie.  Julie seemed like a nice person.  But she's just another powerless cog in a big, seriously messed-up machine.

I found out that my paperwork from the week of July 9'th wasn't processed until August 16, which was waaay after that 10-day deadline.  Julie told me that the storms this summer delayed everything.  So of course, we must be punished for this. (my words, not Julie's)

I was told that when my husband goes off to guard, it looks to the FSSA as if he quit his old job, got a new job, and then quit that.  They have no understanding of how the National Guard works, in spite of the numerous times I've tried to explain it to them.  The good news is that Julie said I do not have to turn in the National Guard paperwork.  The bad news is that they want me to turn in every Guard pay stub from now on.  I'll be sending a note explaining the situation with each pay stub.  But I'm really concerned that every time they receive something from me it will trigger more paperwork.

Meanwhile I've got a couple of kids that I would like to take to doctors and dentists, but I can't until this gets straightened out.  And once we get cancelled, they'll assign us a new doctor again, and it will be another protracted fight to get our old doctor back. 

I am also going to have to wait for them to send me more paperwork, because they've screwed up on that.  They can't figure out who my husband's civilian employer is, even though I have told them.  But don't think I'm going to get an extension on that time limit.  Julie said that they can always go back and pay our medical bills after I get reinstated, but this happened once before and they never did pay off the dental bill we were surprised with.

Once the 29'th hits, and we get cancelled, I'll probably have to reapply all over again, and send all sorts of paperwork--all of it in ten days, of course.

This is what it's like to be poor.  Filling out endless reams of paperwork, trying desperately to get a little help, spending hours and hours on the computer and telephone, copying everything, sending the same forms and copies of documents over and over again.  It's like begging.  Please give me a little money so my children can go to the doctor.  It's demeaning, constantly trying to prove my husband's employment status, our household income, my disability, how many children we have.

How many times can we send the same birth certificates and social security cards?  As many times as they demand them.  We wish we could tell them to go to hell, but we have to have that medical and dental care for our children.  The FSSA holds our children's health hostage.

Wait until my husband gets deployed one day and they immediately cancel the medicaid.  I'd bet the media would eat that up.



Anyway, after the phone call, the girls and I went and got the groceries we hadn't been able to find time to get yesterday.  Yesterday was busy--we did the dollar store, the dentist--

--our dentist is a nice guy.  I've been with him a long time, and never regretted it.  He numbed me up really well.  But my metabolism does not allow that to work.  So after waiting for it to take effect, I finally had to get another round of shots and wait some more.

After that it was lunch time, and then I dropped three girls at my parents, and another girl and I went to the doctor.  Now I'm wondering--will her bill get paid, or will we get stuck with that?  Anyway, after all the paperwork and doctor's visit, I had to go somewhere else and get blood drawn for an entire slew of tests.  It was late when we got home (and my parents had taken us out for dinner) and then that paperwork was in the mail and I literally spent the rest of the night dealing with that so it could go out in the mail the next day.

So, today....after speeding through some of the more important chores and going to my parents' house to use the phone, the girls wanted to go to Wal-mart, so I bought a couple of things there and checked out a few of the more expensive items on my grocery list, in case anything was on sale.  I'd already checked out Kroger's sale prices for the week, so I didn't buy much at Wal-mart.  Wal-mart often has great day-old bread, though.  Our deep freeze pays for itself.  And I saved $35 with coupons today at Krogers--that might be a record for me.  I saved another $30 with sales, not to mention how much I probably save in general just by buying cheap generic staple food.  For under $200 I had the cart so full we had to carry a couple of things.  Chicken was on sale, so I bought eight large packages--meat's supposed to go up eventually, so I'm starting to prepare.  Chicken is starting to be cheaper than beef.  And it's healthier anyway.  I'm also not afraid to take advantage of sales where you get a great price if you buy ten of something, as long as it's something that will keep and that I know we'll use.  So we have a lot of Alfredo sauce and a lot of diet Dew.




Monday, August 20, 2012

My Children's Medicaid is Going to Be Cancelled Again....Because of My Husband's Indiana National Guard Duty

I put that in the title to help the search engines find it.  This is ridiculous.

A quick recap--feel free to skip ahead if you're one of my two regular readers:

We were cancelled the first week of my husband's January 2009 basic training.  This was the first time we'd had any real trouble since my eldest started medicaid in 1996.  The Indiana FSSA decided that my husband must have been undergoing basic training in Oklahoma, while at the same time sneakily continuing his full-time job in Indiana.  Those of you who are acquainted with US geography might be skeptical, but the government was certain that this was what was happening.  No, really, they were.

We were cancelled again the first week of his 2010 summer two-week stint, and again in 2011, first week.  This year we got paperwork but apparently avoided cancellation.  Until now.

My husband had one day of guard duty today, outside of his normal one-weekend-a-month routine.  And that was enough to trigger IT again.

We have a form that has to be filled out by the National Guard in Indianapolis.  This form will have to be mailed to Indy, then mailed back to us, then mailed to the FSSA (no, we're not allowed to cut out the middleman--that might make too much sense), and then go through the all-important several-days-long processing procedure, all before the 29'th.  Yes, we have nine whole days before our children's medicaid is cancelled.

I'm glad that we at least have Tricare now.  We didn't at first.  But we still have to pay 15% of a lot of things.  If a child were hospitalized, that could add up very quickly.  And we like being able to take them to the dentist....

Another form has to be taken to my husband's employer--but--get this--they put the wrong employer on the form.  So another form must be procured, through the mail, and taken, probably by hand at least, which will be quicker, to the employer, and then sent back to the FSSA.  Oh, and don't forget processing.

I must also send them copies of the Tricare cards.  It doesn't matter if I sent them the second week of July.  They want them again.

I've just spend hours on this, filling out paperwork, swearing, making copies, starting a binder, whining, writing state government officials, posting on facebook, and contacting the reporter who expressed an interest last year in knowing if this happened again.



All this after getting an old filling replaced this morning, taking the bill to my parents, and going to my old GP to get started on the medical part of my Social Security appeal.  I had blood drawn at the nearby hospital.  I filled out a lot of paperwork.  I even impressed myself by doing the dollar store portion of our grocery shopping when I had the time.  I also impressed myself by actually finding the dollar store on my first attempt.

Oh, and when I went to the dentist, I found they'd re-paved the road in a new color and posted orange signs everywhere, which confused the heck out of me.  Suddenly my 13yo daughter piped up in a small, discouraged (one might have almost said disgusted) voice.  "And you just missed the dentist."

Fortunately I know that area and was able to find it again.  Kinda sad that I drive like that before they give me nitrous.



And now I've got to go--it's getting late--good night!

Friday, August 17, 2012

Homelessness or Suicide, That is the Question

I have no intention whatsoever of committing suicide.  I have many good reasons not to--four children who need me, family who would mourn me, pets, a roof over my head--mazurkas yet to write, books to read, trees to walk under.  Not to mention a fairly normal fear of pain and suffering.  But....

A couple in a city not far from here committed suicide a week and a half ago.

Many people have judged them for their selfishness, and/or stated with absolute conviction that this couple will rot in hell for all eternity.

The Kinzers were my age--mid-to-late forties.  They had no children.  They apparently had no relationship with their families.  They lived in a trailer park.  They both struggled with ill health and were unemployed.  Their bills were piling up.  Their lights had recently been turned off.  And they were about to be evicted.

They thought about it, and made what seems to me to be an almost logical decision.  They wrote a fourteen-page letter explaining their decision to their families.  And then....the husband shot his wife, and then himself.

They may have reached out for help--we don't know--from the government, from charitable organizations, from family and neighbors.  Some people have assumed that they never reached out, and wondered why.  But....

We've reached out.  Repeatedly.  We're not getting unemployment, Social Security, welfare, food stamps, Medicare, Medicaid, CANI, help from a health clinic--you name it, we are not getting it.  My husband is looking for a full-time job and not finding one.  I am looking for work online with no education or job experience, and for government benefits of any kind.  My family is all that is standing between us and homelessness.  Even if we lost our home we would have somewhere to go.

If I had no children and no relationship with my family, if I was facing homelessness this winter--and I would quite likely not survive winter homeless with the disease that I have--I would probably give the idea of suicide serious consideration.  Especially after all the times I've been told how poor and worthless and lazy I am, how I'm not really sick and I should get a job, all the times I've reached out....

I might decide that it would be better to die at home, before I lost what little I had left and went off to die in the cold somewhere.

Please don't worry--I haven't even thought about suicide, and if all else failed one day, I'd still be a mother with children living at home to whom I could never dream of doing that.  And I'm lucky--I have at least a handful of people who would drop everything if I even hinted at it.  But I think I've caught at least a glimpse of the despair and loneliness that would drive someone to it.

I hope I would keep talking, to family members and friends, acquaintances, a suicide hot line, a church....surely somebody somewhere would help....

Thursday, August 16, 2012

It's a Pulley! And it Moves!

I learned another lawn mower-related word today:  "Pulley".  It's those round things above the "deck" that the belt kept slipping off of over and over again today, making an hour and a half or so of mowing take three hours.  I mentioned it on the phone to my father, who said the belt needed "tightening"  (is there a buckle or something?).  After I explained my terminology issues, he explained what the "pulleys" were and that one needed to be moved further away from the rest of them.  When I heard this involves a crescent wrench, I decided not to do it myself unless I have to.

You really do learn something new every day.  It's just like the computer--every time it breaks I learn something.

So I mowed the lawn, trimmed with the weed whacker, clipped with the hedge clipper, pulled some weeds, and then it rained.  After it rained, I pulled at least a gross of ragweed--they're pollinating now, so after a rain is the only time it's safe to touch 'em.   I focused on near where people would walk, because they'll get it on their clothes and bring it indoors.  But the hay fever isn't bad this year.  Maybe the drought killed hay fever season.

So here it is, August, and I'm mowing and weeding every week.   A few plants are putting forth a weak showing of spring flowers.  They're confused, too.

I also tidied up the camper by our front door.  I picked up everything, dusted, wiped the table, and swept.  The twins have been sleeping out there a lot.  We have a TV with no reception and an old VCR, so they watch movies with one of the dogs and share the sofa bed.

OK, here's today's Picture of the Day:

No, wait, this is better:




This is Scooby, one of our dogs.  He's actually been on a diet and lost a fair amount of weight since this picture was taken.  He's even more handsome now.  He's enjoying his physical fitness.

Here's the picture I was going to show you:


It's from https://www.facebook.com/#!/pages/AccuWeathercom-Astronomy/178186248887910 .

They follow the solar activity a lot--I remind myself slightly of Jonas Quinn and his 'thing' for the Weather Channel.

Here's another of their pics:



We live in a marvelous time--this is a sunset on Mars, courtesy of the Curiosity.

Change of subject....

I've found a new weight-loss website, called www.sparkpeople.com .  It's free.  You can enter everything you eat into their search engine and it'll keep track of calories, carbs, fat, and protein.  It will also keep track of your exercise.  I've been eating like I always do, and exercising, and it says that it may actually recommend that I increase my caloric intake because of my activity level.

How many times in my life have I heard that I might not be lazy enough?

I figured this is worth a try--it is free, after all.  I'll keep you posted. (Posted?  That was unintentional.)

G'night.

Monday, August 13, 2012

658,450 on Bubble Blitz! It's a new record!

I'm back.  It was just too depressing to write about religion/poverty/disability for a few days.  So now I have catching up to do.  Let's see....

My husband is back to work part-time, his boss apparently having exacted enough retribution for his three-week guard stint.  Yes, I know it's illegal.  It's been my experience over the years that when you work at the bottom, they can get away with anything.  Maybe even murder--I heard of a former co-worker with lots of complaints murdered--not raped, not robbed, just murdered--after I was let go for not sleeping with the boss.  Nothing would surprise me.

Anyway, we had a lot of fun Wednesday, Thursday, and Friday.  My sister, bil, and niece Hazel came for a visit.  Hazel is three, and she couldn't be more fun.

On Wednesday my sister and I went to the lawyer.  She seemed very competent.  The lawyer I mean.  Not that my sister isn't competent. lol  Where was I?  We went over my disabilities (there's that d*** word again) thoroughly.  Yet another stroll down memory lane.  Afterwards (it was my sister's suggestion, honestly) we went to Atz's for ice cream.  I highly recommend chocolate ice cream with hot fudge sauce and oreos on top.  My diet took a little vacation those three days, but I was pretty good--I had a grilled chicken salad for dinner and no dessert--not that I had room for dessert.  It had been nice to have a long chat, just my sister and me, over ice cream.  And then we pretended we hadn't done it.  For some reason my children and husband did not believe we'd stopped for coffee. lol  I think it might have had something to do with my passionate hatred of coffee.  I also got to spend time chasing Hazel up and down my parents' hallway, jumping out at her and pretending I wanted to eat her toes.  I think she's ninety percent certain I wouldn't really do it.  I can still hear her--I'm at one end of the house and she's at the other:  "Aunt Deeeeb!  Aunt Deeeeeeeeb!  Aunt Deeeeeeeeeeeb!

On Thursday we went to the Fort Wayne Children's Zoo.  This is one of the top ten attractions in the country.  I don't even get paid for saying that.  We visited Africa, Indonesia, Australia, and a farm.  We rode a sky ride, a log boat ride, and a train ride, and my niece rode a pony and a merry-go-round.  Afterwards we had pizza at my parents' house, where my sister and family stayed while they were here.

On Friday we went shopping at Glenbrook Mall.  My sister bought us all clothes, and lunch.  I bought a couple of bargain books at B&N--a book on geometry and a book on chemistry.  I might be a geek after all--I'd much rather buy books than clothes.  We had dinner Friday night at the last of the three restaurants that my parents know exists. :)  We had a lot of fun playing with Hazel at dinner time--we played 'Who took the cookie from the cookie jar?'.  And of course (later) my girls and I promptly ganged up on Hazel when she said, "Say everything I say"--we all repeated dutifully, "Say everything I say" which screwed it all up right from the beginning.  I think she might have wondered if we were stupid. lol  Then we went to a Tin Caps game--the Tin Caps are another of the top ten country-wide attractions.  We have two of them because we're better than the rest of you.

It was a pleasant vacation from reality.

By Saturday it was over, and at my house we were all in a state of collapse.  We've all had a small cold.  It had rained during the ball game and it had been chilly.  My 13yo started in on the first asthma attack she's had in quite a while.  It was still going on Sunday, and today.  We think she's going to be okay now.

On Sunday I whipped through a to-do list:

#1  Make to-do list.  Check.
#2  Research Tricare.  Check.  We have Tricare Reserve Select.  $50 deductible and 15% copays if I understand correctly.
#3  Email sister.  Check.  Several times.
#4  Fill out lawyer's papers.  Check.
#5  Ask for hearing online.  Check.
#6  Call old (I meant, I haven't seen him for a long time) doctor for appointment.  Check.  Did this today.
#7  Fill out form for congressman.  Check.  Would you believe I actually got a response this time.  Maybe they can find out why my Social Security was cancelled in the first place.
#8  Post on facebook (seriously, spellcheck doesn't recognize facebook?) CVID group and ask for advice.  Check.  If I'd only known--I'd have thirty binders right now full of every report card, failed assignment, doctor's appointment, neurological test, journals for every job.  A lifetime of failure well-documented.
#9  And I wrote a letter to the editor--more on that another day, perhaps.

Well, it looks like my politely savage emails may have saved our children's medicaid.  We didn't get cancelled this year.  Perhaps it's been my fault in years past for not having reached the end of my rope sooner.

And goodnight, I'm going to bed soon.  After a few more games of Bubble Blitz.


P.S.  I just posted a link to a one-chapter fanfic in the Candy Jar (scroll down on the right).






Sunday, August 5, 2012

Money & Power & Religion

I just saw the news.  Seven people shot and killed in a Sikh Temple in Wisconsin.  The theory is that it was an act of 'domestic terrorism' in which a man killed his fellow human beings because the men were wearing turbans and he mistook them for muslims.  This has happened before.

It seems to me that it doesn't really matter all that much which religion you practice--what really matters is how you practice it.  This statement would make some people I know very upset with me.  But in my somewhat ordinary life, I've seen people motivated by religion to give money to the poor, feed the hungry, take care of the sick, care for children and old people, and offer encouragement, many times, in different places.  I've also seen people go on power trips for the sole purpose of controlling their fellow practitioners, insist that the only way into heaven is their way, beat their wives and children, blame the poor, sick, and hungry for their lot, and argue endlessly over who's right about the most insignificant matters, all in the name of religion.  Then again, I've seen people who don't formally practice any particular faith behave in many of the same ways.

I guess I'm just lucky to live in a neighborhood where people don't routinely shoot and kill each other in the name of God.  Although apparently no place is completely safe.

Religion is a very powerful thing.  It can be used for a great deal of good, or for a great deal of evil. Like any other tool, it's how you use it that really matters.



I've been somewhat disappointed recently--in my recent study of Kabbalah, I feel I've learned a great many things, looked at the universe from a different perspective, and been inspired.  So after some research, I approached one of the main organizations teaching about Kabbalah in an effort to learn more.  I'm trying not to jump to conclusions, but it seems that as soon as the discovery was made that I have no money to offer, I was dumped.  It's not the first time.  A couple of churches have treated me the same way over the years.

Money is another very powerful thing.  I can see why people would do just about anything to get it.  I'm starting to feel desperate myself.  What would I do to be able to keep my house and my trees and my pets and my stuff instead of moving back in with my parents, I find myself wondering.  Over the years I've refused to lie, cheat, or steal for money.  The times I refused to sleep with bosses probably cost me a couple of jobs.  Being honest doesn't seem to have ever gotten me anywhere.  Being disabled means I get accused of lying all the time anyway.

I wouldn't want to seriously hurt anybody to keep my home.  At least I have somewhere else to go if I have to.  I wonder what I would be willing to do if my children were going to be homeless, or hungry.



I can see the temptation--even for someone whose life is going reasonably well financially--to use spirituality for financial gain.  Who doesn't want to be rich?  Not to mention well-respected.  A 'pillar of the community'.  Powerful, even.  And it's all perfectly legal.

Perhaps religion and money should be separated completely.  A church (and don't ask me how we'd finance the building) where money is not allowed, except to be given in its entirety to charity.  A place where one could go to seek enlightenment and inspiration and self-improvement and learning, and community, and opportunities to serve humanity.

Although I doubt it would stop the bickering.

Saturday, August 4, 2012

A Very Depressing Blog Post

I got some bad news yesterday--my husband has apparently been fired--his boss has simply stopped having any work available for him.  It was probably because of his National Guard duty.  So our household has no income.  My parents are supporting us totally now, except for some help from my sister.  We have no unemployment (after all, he was only working part-time anyway), no social security, no food stamps, no welfare, nothing.

I can only hope that my meeting with the lawyer this coming week is productive.  My prediction is that she won't take the case, because she can only get paid if she wins--this is the way Social Security is set up.  The lawyer would get a percentage of the back pay.  But I don't have any recent medical records.  It may be that my sister will pay for me to see a couple of doctors, and then back to the lawyer we would go.  This could take a very long time.



We had to go into the Social Security office yesterday to get those replacement cards, and I asked for the CD.  They gave it to me, no problem.  So last night I perused that.  The neurological test I took--the Wechsler Memory Scale--showed that I have an extremely poor visual and spatial memory, and an auditory memory worth bragging about.  This is no great surprise--I could tell how well I was doing on those tests.

The doctor I saw for my physical said that I was 'partially credible'.  They should have taken a blood test and given me a pneumonia vaccine and tested that--I would assume that the results of those blood tests would have been 'entirely credible'.

I'm trying not to be anxious/angry/depressed/frustrated today.  I spent a couple of pointless hours this afternoon looking for work I can do online--as if I haven't looked already.  No, you just can't make thousands of dollars (or any dollars) taking surveys online.  As if I didn't already know that.  Desperation is making me dumber.  Very soon my parents will have to start going through the money they've been saving all these years for my children's college educations.  That might last us until spring if we're lucky.  At some point we'd have to move in with them.  Then their retirement money will have to feed and shelter all of us.  They don't deserve this.

There just isn't any point in worrying about it, other than that it's motivating me to spend more time going through the clutter around here in case I have to pack.  I try not to worry about what this will do to the kids, or that our two dogs might have to be separated from us to go live with strangers.

I'll just have to think about today.  And now I'll go back to looking for work online and going through our stuff.

Thursday, August 2, 2012

Another Word for 'Disabled'

Drum roll................today's Picture of the Month:



This is that volcano that erupted in Iceland several months back.  And now it's been several days since I found this picture, and I've slept, and I forgot where I got it.  Bing, probably.

 

We're watching 'The Happening' by M. Night Shyamalan tonight.  I definitely would NOT let children watch this.  My youngest are eleven and it's scaring the heck out of them. :)  It's a bit gory, too.  A lion rips a guy's arm off, and I pipe up, 'It's just a scratch'.  (Monty Python is too funny.  Half the people in the room thought I was funny.  Half of them thought I was gross.  Probably the same half who didn't think Monty was funny.  I think some British humor is hysterical.  I loved 'Red Dwarf'.)

 

I've decided I want a new name for 'disabled'.  It just hit me the other day.  I am tired of being 'disabled'. 

'Crippled' would be silly--it's not as if I can't walk.  Handicapped?  No.  Not today, anyway.  Sick?  Ill?  That doesn't seem to do it justice.  People with the flu (and people who say "it's just a scratch") are 'sick'.  And don't even get me started on 'differently abled'.  Not only is it an unwieldy mouthful, but it sounds as if I'm just fine, no problem, just 'different'.  It doesn't give any indication of some of the struggles people like me go through.  As if we can just pretend everything is fine.

It's just like changing from words like 'idiot' and 'moron' to 'retarded', which then becomes a pejorative so we say 'slow', and then 'mentally challenged'.  Actually, 'mentally challenged' might apply to me pretty well if it weren't already taken.

The problem is that any word with which I replace 'disabled' will just become another word with negative connotations.

I'd like for that to disappear one day.  I will very likely never be well, but I would like to be O.K.  I'd like it to be acceptable that I'm not well, and that my brain doesn't work like everybody else's.  I'd like to be just one of the guys.

Warning:  I am about to whine.  I am tired of being disabled, and I am tired of trying to prove that I'm disabled, and I am tired of apologizing for being this way.  I'm tired of being poor.  My husband hasn't worked in a week, and I can't work, or get food stamps or social security, or find even a part-time job online (just spent last Sunday afternoon looking again out of desperation).  Tomorrow we all are going to the Social Security office to get replacements for the cards that had to go in person to another government agency and never came back.  I'm going to ask for my CD of info for my disability appeal.  I am tired of dealing with this.  I wish I could just go on with my life.  There must be more than this.

I know some people have bigger problems.  Although when I look at the possibility of having to move back in with my parents some day, that seems big enough.

Someone asked on a Kabbalah thread if people would say what their greatest problems were.  So many people worried about their finances or their health or their interpersonal relationships.  I guess this is just the way it is.



Anyway, I've started (just barely) the third movement of the sonata.  The second is still getting finished up.  It's funny--I was sitting at the computer writing the music for the second movement, and I heard the beginning of the third.  This isn't unknown for composers--I sometimes hear music, like an auditory hallucination.  Sometimes I can do it on purpose now.  So I stopped everything right in the middle and started writing the beginning of that third movement.

And the movie's over--time to go!  I've got things to do tonight.  Bye!










Tuesday, July 31, 2012

My Children's Medicaid Gets Cancelled Every Time My Husband Has National Guard Duty

There.  Now if anybody puts some of those terms into a search engine, they might find me.  I haven't been able to find anybody else who's having this problem.

As far as I've been able to ascertain, we haven't been cancelled yet this year.  They've certainly made my life unpleasant, though.

Basic training in 2009, summer stints in 2010, 2011, and this year--every time, a few days after he starts (and it's been different times of the year), the nice people at the FSSA office cancel my children's Medicaid.

If someone wants to contact me regarding this, my email is deb8851@gmail.com.  Or just leave a comment.  And feel free to peruse the blog if you want to read about everything that's happened so far.  Beware--I talk about lots of other things, too. :)

Sunday, July 29, 2012

O.K., Now What ??? (surviving SHTF)

Somebody in an online group to which I belong recently brought up the topic of who's going to die first if there is a major catastrophe--what survivalists refer to as "SHTF" (s*** hits the fan).

Of course, really elderly, infirm people, and severely disabled people, and people who depend on electricity and/or medication (so many people don't have even a week's worth of their life-saving medications on hand) or life support, are probably going to be first.  This is not pleasant, but denying reality won't help anybody.  As an amateur survivalist, I personally try to keep a stockpile of prednisone and antibiotics on hand for myself, but if the lights went out and it got cold in the winter while I was sick, I could be in serious trouble.  Certainly leaving my home during an episode of illness would be bad.  Fortunately, where we live I'm quite likely to be able to 'shelter in place'--we're in an isolated area and I'm fairly stocked up, so I wouldn't have to venture out for supplies right away.  Being disabled is not a factor in my favor..



This morning, after my family left for church, I saw yet another piece of one of those TV shows where people get a free home remodeling.  (I haven't really changed the subject here lol)  Someone was complaining bitterly about the type of flooring in their old shower, and how people would actually want to use the new shower.  And the old one didn't look that bad!

I see this all the time.  And then I look around my house.  Our flooring is coming apart--and I'm just glad we don't have actual holes to walk around.  Some people do.   Our toilet doesn't flush right.  But we have indoor plumbing.  The other day one of my daughters asked why we have so many things on the walls.  I like things on the walls.  But the real reason is that there are holes in the decaying plaster in every room in this house.  However, the house is at least structurally sound.  I was glad when a storm a couple of years back blew down our chimney so we could get a new roof with insurance money--we were starting to get leaks everywhere.

When my husband joined the National Guard and we got the bonus, one thing we did was replace the bottom half of our kitchen.  Now our counter top is not crumbling and all of the cupboards have doors.  We would have done it sooner, but where would the money have come from?

Our furniture is old and crumbling.  Our appliances are old and cheap.  Our house hasn't been painted, we 'need' landscaping.  Our cars often don't run perfectly.  Or look pretty.

People sometimes think we need to take pride in our house.  The reality is that we're just broke.  All the time.  For years and years now.  I'm afraid to have people over, because of the judgmental attitude I've experienced several times now.

But I'm not saying this just to complain.

We buy generic, non-organic, not always healthy food, because it's cheaper.  But I remember my mother telling stories of the Thanksgiving her family had one can of spam, and biscuits made with flour and water.  She tells of outhouses, and having to walk a long way to a neighbor's house to carry water home.  Of living in a house built over an open sewer.  Of collecting bottles along streets for money, and wearing classmates' discarded clothes, and never getting a high school yearbook.  I'm sure my mother's stories have had an impact on my attitude.

We have a lot to be grateful for.  Honestly, we live in a magical time.  I get up in the morning, and the interior of my house is climate-controlled.  I flip a switch, and it's light.  Presto!  When our electricity went out a few weeks ago, one of the things I noticed was how much it sucks when you get up early in the morning and you can't do anything because you can't see.  And then there's the running water--cold and even hot.  Telephones and internet and automobiles connect me to people I might hardly ever see (or not even meet) otherwise.  And I have access to all kinds of art, music, entertainment, and knowledge on every subject, right in my own home.

And then there's modern medicine.  I (hopefully) won't get a small injury and die from infection.  I almost certainly won't die from the bubonic plague, or polio, or smallpox.  I have contact lenses so I can see.  I'm forty-six and I still have all my teeth.  I might live another forty years if I'm lucky.  Life expectancy is a lot longer than what it used to be.

This is an incredible time to be alive.



I know an awful lot of people who have no idea how lucky they are.  They're fussing over their interior decorating, lamenting that their kitchen cabinets are ten years old and need to be replaced because they're now out of style.  I've heard people go on about how they've got a lesser-paying job and can't afford to buy new clothes now, what a tragedy.  Except they already have fifty outfits. 

Meanwhile, I'm waiting for the Wal-Mart card I usually get from my family for my birthday (in a little over a month) so I can buy a couple of things.  Sometimes I've been down to one pair of pants, or one pair of shoes, or a couple of shirts.  No winter coat at times.  A purse with a broken strap.

People go on about their vacations, and the expensive restaurants they go to.  And they seem to have no idea how fortunate they are.  The actually complain about how little money they have, sitting there wearing their designer clothes and jewelry, hair styled professionally, manicured fingers and Vera Bradley purses.

These are going to be the first people to crack if/when the "SHTF".  Because they will have no idea what to do when their manicurist and hair stylist close up shop.  Seriously.  And heaven help them if the lights go out.  No cell phones.  No internet.  No television.  No showers.  Don't get me wrong--I'll miss those things and hope they come back real soon.  But I could survive mentally, short-term certainly, but long-term if I have to.  And that's the attitude that will carry the day for some people in a crisis.

Us poor people have learned valuable skills over the years.  How not to take too much pride in our appearance (don't get me wrong here--I showered today and everything).  Or our homes (yep, I've done chores, too).  How to survive when the phone or internet or TV gets shut off (because we couldn't pay our bill).  How to eat at home, with whatever we're lucky enough to have in the kitchen.  How to tolerate physical discomfort.  How to get along without medical care.

How to fix a strap on a purse and deal with the fact that we can't buy a new one right now.

Some of the wealthier people, especially if they've never been poor (or camped a lot, or something), will get up in the morning and make what might be the most important decision of their lives.  "Well, look what's happened, now what am I going to do about this?"  They'll develop at attitude of "What will I do today to take care of me and mine", and they'll use that mental attitude to cope. 

But I think many people are going to have a nervous breakdown. 

A lot of them haven't even admitted to themselves the possibility that society could ever have even a temporary breakdown.  Maybe it's too terrifying to contemplate.  Although when a minor disaster hits, I personally find myself a lot calmer with my bottles of water and cupboards of food and candles and wood stove and wood.  It's like, 'Oh, OK, this is what I prepped for, now this is what I'm supposed to do'.

While some people are having their nervous breakdowns, they might not even have clean drinking water, or food, or heat, or light, or medication, because it never occurred to them that they could be thrown on their own resources, for even a few days.

They will be in shock to find themselves in a situation where it no longer matters what kind of flooring they have in their shower.