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?


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

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!!!


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


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.