Tuesday, January 31, 2012


The first half of today went great.  I was breathing pretty normally.  I packed up the kids and went to run errands.  Picked up bird food at one place, went to the Salvation Army, went to spend some of the girls' Christmas gift cards, and then went to lunch.  Which is when the first asthma attack hit.  It sucks to have an attack in a restaurant.

I picked the warmest day of the week for errands, thinking it would be great for my lungs.  What I didn't count on (and probably should have, now that I think of it) was the approaching....weather front.  So I limped my way through a visit to the credit union and the grocery store, grateful to have gotten off to my usual early start today so that I had a lot done by the time this hit.  I went to pick up milk and a couple of other things, while the girls pushed the cart.  And now I'm home, fighting for breath.  It's not as bad as it has been this winter.  I took a lot of prednisone while I was out, so I could finish the errands.

It could be worse--I'm not stuck in THE CHAIR.  Tomorrow the front will be past and I'll almost certainly feel better.  But spring just can't come to early for me.  I'm generally healthier when it's warmer.  Not always, but usually.

On a happier note--one of my 10yo twins has inherited my mean sense of humor.  Shannon was helping go through some of their old clothes and found one of my shirts where it didn't belong.  She came downstairs and pretended to read the tag (with a mischevious twinkle in her eyes) to see whose shirt it was--"x x x x x x triple x".  Way more x's than I actually require.  She's lucky I laughed.

Well, we had butterscotch chip cookies cooling on the table, and I (pretending to be stern) said, "No more cookies for you."  She came right back at me, "Well, no more cookies for you, either."

It was funny.

It's a risky thing to do--making fun of Mom.  It's like, the closer you get to that edge, the funnier you are, but if you go over, you suddenly find yourself changing every litterbox in the house and taking out all the garbage....


Saturday, January 28, 2012

...And snow. Add snow to the list.

I'm taking a break from housework--I just keep coughing and coughing.  I've had lots of little asthma attacks, and there's no reason to think this is anything other than temporary.  It's still forcing me to take breaks from whatever it is I'm doing whether I want to or not.  But at least it's been five days since my last post--I haven't felt like whining about how sick I am lately. :)  I've been keeping busy cleaning house (did I mention my husband is going to have a graduation party here this spring?) and playing the piano.

I've dealt with another weather front two days ago, and I may be dealing with one now, which means I may have to take yet another dose of prednisone today.  But at least I'm up and around.

I haven't been out much lately.  It's getting to the children, especially my fifteen-year-old, whose Kid's Club at church even got cancelled this week (because of the weather).  I'm just not capable of going anywhere strenuous.  Going to the grocery store has been enough of a challenge.  I can't imagine walking around a museum for any length of time, or in the cold air for more than a minute.  So I was glad when one of the kids' friends' moms invited them to spend the weekend.  They really needed to get out.  And we've got our monthly pizza with my parents tomorrow night. :)

And my husband is still laid off.  It's been almost a month now, and we still haven't seen the first unemployment check.  This is happening to lots of people these days.  I just did our taxes this morning--it was a good time, since the kids are gone.  I've been known to rise very early in the morning and do them before the girls wake up, just to have the peace and quiet.

I wanted to direct deposit our tax refund, since we could certainly use the money now, but we have a problem--my old student loans.  I've never been able to get a disability discharge, even when I was collecting social security for several years.  Did you know that the student loan people can rule you're not disabled and take your social security disability checks?  It never happened, but they kept threatening, and I looked into it--they can.

The problem is that they want the exact date my disability began, but won't accept any date I give them--birth, the day I dropped out of college, the day I went on social security, the day I was diagnosed with CVID--none of them are acceptable. 

I showed at least one potential symptom as a young child--ear infections, fairly severe sometimes, over and over and over again.  I still get them, even in summer occasionally.  I got pneumonia a few times as an older child.  But the symptoms got somewhat worse in high school, and then got even worse again when I was in my late twenties/early thirties.  This isn't unheard of with CVID.  I didn't get diagnosed until I was thirty-five.  I was attending college (started in my mid-twenties), getting sicker and sicker, and doctors were telling me there wasn't anything wrong.

So (back to the present) we're getting close to the point where the student loan people can take our tax refund, or any other money, right out of our bank account.  I'm still trying to get into an income-based repayment plan--I've already been accepted, but because my husband joined the National Guard a couple of years ago and got his bonus check in 2010, they had our income for that year listed as higher than it actually is now, and they figured our payments accordingly, which means we can't afford it, being below the poverty limit.  So I'm going to reapply for that program and hope we get a better deal.

We're hoping we can get that refund check in the mail and cash it--there's a possibility they could take that, too.  We count on that money every year, for getting caught up on bills, getting new contact lenses/glasses, fixing things around the house that desperately need fixing, buying little things we need, etc.  Last year a medical bill (for my kidney stone surgery) took most of it because they were threatening to take me to court and had the sheriff come to our house.  This year I'm going to get that check, cash it, and spend it as fast as I can.  On sensible things.  We have plenty of bills to pay.  I'll get my contact lenses and new reading glasses, go to the butcher and fill the deep freeze, and whatever else I can do--maybe pay our lp heat bill for next year if there's enough money left over.  And we'll probably order a pizza. :)

We want to be able to show that the money's gone, and where it went, if somebody comes after us again for another medical bill.  No more trying to save half of it to help us through the next couple of months.

Well, in spite of my griping, I'm having a nice quiet day here without the kids.  I have a couple of new music books from Christmas, and I've started playing through them.  And now I'm going to go take more prednisone, because I'm still fighting to breath.  That's just not going to go away.  I've checked--there is another weather front on the way.  You can add approaching snow to the list of things that scare me when I'm even a little sick.  At least the prednisone will probably work.  Then I can go back to what I was doing.


Tuesday, January 24, 2012

Add drain cleaner to the list....

....of things I'm afraid of.

Hi.  Had another minor setback this morning.  Our plumbing broke down last night, and this morning I started reacting to the chemicals used to fix it.  I finally opened windows in the kitchen (in January) and left them open.  Had to take more prednisone.  I was fine by this afternoon.  I don't usually react with an asthma attack to very many things, except when I'm sick to begin with.

My sister is sick, probably with the same virus that everyone here has had, and she's coughing whenever she tries to talk.  I'm a bit worried about her.  One of my twins is still coughing at night.

I'm tired now, but at least it's close to bedtime, instead of all day long.  I don't have anything else to say, so I'll stop talking. :)


Monday, January 23, 2012

Sometimes I'm afraid of thunder and lightning

Hey, I'm still here!  I've been too busy cleaning house and merrily playing my Schubert piece and Chopin's mazurkas to spend much time on the computer.  I suppose I've had enough computer time lately to last me a while.

I had a bit of a temporary setback yesterday, though.  We had a storm front come through last night, and so, as is usual with me, I spent the entire day getting worse and worse until after the front hit.  I took prednisone, which I hadn't had to take for a couple of days, with breakfast, then with dinner, then twice after dinner while I was sitting in a chair gasping for air.  This morning I still had to take it once, when there was another front due in the afternoon.  Now it's evening though, and I'm breathing all right.  It may still be a couple of weeks before my breathing returns to completely normal, assuming nothing else goes wrong.  I'm glad this didn't happen a week or two ago--it could easily have put me in the hospital.  It's happened before.

One of my kids is still coughing from that illness we all had, and my sister has it.  She really sounds sick--she says that if she talks, she starts coughing.  I'm worried about her--she has a business trip coming up this week.  I vividly remember in years past having gone to work no matter how sick I got until I ended up being an inpatient at the hospital.

I'm still taking my antibiotics preventatively.  The brand I'm on now is safe for that.  I think today is the first day I don't feel exhausted in a long time.  Although I should say that, I'm feeling good, but still not good enough to go outside this morning and pick up all the new kindling the storm left everywhere in our yard.  I had to send one of the twins outside to do that.  I've noticed after reading back over some of my posts that I tend to put a (practically delusional) positive spin on how I'm feeling.  Maybe it's just that I'm comparing how I feel now to how I've felt over the last month.  Relative to that I feel terrific.  Just can't pick up kindling in the chilly air.  But at least I'm able to clean house and play difficult piano music, as long as I pace myself.

And now I'm off to play more mazurkas.  See ya!

Saturday, January 21, 2012

That poor chair will think I don't love it

Don't let the depressing tone of the last post fool you....I'm doing pretty well today.  Happy to be able to play the piano, and making progress on cleaning out all those kitchen cupboards one at a time, day after day.  Happy one of my kids made chicken ceasar salad for dinner last night.  Happy to be out. of. that. damn. chair.  I love my laptop, but not every waking minute.  Not that everything is completely wonderful--I'm exhausted from this last month, and I'm still having asthma attacks.  But it's better.

One of these days if it warms up (I react to the least little bit of cold air right now by having a horrible asthma attack that lasts at least an hour), maybe I'll be able to go outside.  I miss wandering around outside aimlessly....

It's just nice to have whole moments go by when I don't have to think about breathing.

It's a Kind of Magic

I read this the other day....


....which led me to read this, about the proposed changes to the definition of autism/Asperger's....


When I read this, I realized that under the proposed changes, I would no longer have Asperger's. This is because I'm lucky enough to be able to communicate with people face-to-face, at least at a rudimentary level.  At the more experienced age at which I find myself, I like to think that I actually do reasonable well, although when I was younger I quite frequently got stuck at 'rudimentary'. 

Being unable to engage in 'play' is another criterion on the new list, but I wouldn't qualify on that account either, because I'm also lucky enough to be able to visit the land of make-believe.  (And some days I like it better there.)

Because of these two items, I most likely would no longer qualify for Asperger's.

Presto, chango, I am cured.

....And then this morning I read this:


This paragraph sums up the last article for me nicely:

"We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder," said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to chance. "It involves a use of treatment resources. It becomes a cost issue." (both sets of italics are mine)

At least he's honest about it.  But what about that cost?

Personally, I was never diagnosed with Asperger's.  Back then, most people had never heard of it.  So there was a total savings on 'treatment resources'.  However, I went through year after year of social isolation in public school (and outside of it), unable to recognize students and teachers, unable to hear what was going on around me, getting lost over and over again, and failing many classes, sometimes more than once.  I did not graduate, and at nineteen was unable to drive a car or get a job.

As it turns out, there was quite a bit of cost involved, not only financially but personally, but it was all absorbed by me and my bewildered family.

I would have desperately done anything to have been able to pass myself off as only "a little odd".

Over the years I have learned a lot about Asperger's, and I cope far, far better than I used to when I had no idea what kind of horrible thing was wrong with me.  But I think the next time I go to bed and can't sleep, I'll lay there and fantasize about what my life would have been like if I'd been diagnosed at a young age, and there'd been some resources allocated for my treatment.

Thursday, January 19, 2012

CHRONICLES OF FIBROMYALGIA: Fibromyalgia Patients Don't Want To Get Better

CHRONICLES OF FIBROMYALGIA: Fibromyalgia Patients Don't Want To Get Better: Anyone ever heard those words? I have. From medical doctors to multi-level marketing juice purveyors and everyone in between. It's stupi...

I do like Ms. Tyler's latest blog post.  Even though I have a different illness, I've often thought the same thing--that sometimes trying to have a positive mental attitude in spite of being ill backfires horribly.

It's certainly not the case that healthy people never have any problems and never have to put any effort into being happy.  But I think some people assume that, on the one hand, if I'm not whining about being sick, I must secretly enjoy it.  (That's what I get for only whining in front of people I know fairly well, except for this blog, where I whine indiscriminately to anybody bored enough to listen.) 

On the other hand, if I do whine (or even ask for help), I must be a hypochondriac looking for attention.

But I made a decision once, a long time ago, that I was going to do my best not to let my illness steal the good days....

Can I have a side salad with that, please?

Good afternoon.  I've just been out grocery shopping with the girls.  We were loooong overdue for a shopping trip, so we went into a dollar store, bought a cart full of pet food bags, and then went back in for a cart full of other household supplies.  Then we went to the grocery store and bought a cart and a half of groceries.  This is life with two adults and four teens/pre-teens and two big dogs and some cats.  We shop every other week, and we'd missed one trip.  Now we're ready for the next round of illness.  I sincerely hope there isn't one.  Every day of recuperation increases my chances of not being dragged down as far next time.  This is the game we always play until spring.  I could be well for the rest of the winter, sick every day, or anything in between.  Maybe I won't get sick right away.  There might be a snowstorm, though.  It's snowing and blowing outside as I write.  The palm trees are really swaying in the breeze out there.  It might be just as well we shopped today.

I am so tired.  Even though I know I've been sick, I was surprised at how this short trip exhausted me.   I had trouble focusing on conversations with clerks.  People would say things and I wouldn't hear them.  By the time we got home, my knees were shaking.  I've been starting to move around more this last 24 hours or so.  And I'm still down eight pounds from a month ago.  Last night I suddenly decided to eat everything in sight.  I'm proud of myself--everything in sight was chicken and rice and salad and beans and one piece of carrot cake, so at least it was fairly healthy. :)  Then we went out for pizza for lunch today and I was surprised again at how hungry I was (especially after last night).  Had a salad and diet soda with the pizza at least.  I've been craving salad with every meal.  Guess I'm just trying to get my strength back.

Even the girls were tired.  I've never seen them like this.  They're never tired.  Ever.  Everybody here has had such a rough winter so far.

I'm going to go put a few more groceries away and then sit back down again.  I'm really feeling good.  Had a couple of asthma attacks today, but it wasn't too bad.  Slept through the night.  Now, with any luck, I'll just stay home for the next several days and continue to recuperate.  Maybe I can start to actually feel well one day.

See ya later.

Wednesday, January 18, 2012

Piano, chores, break. Piano, chores, break. Piano, chores, break.

Don't worry, the reason I haven't posted since Monday is that I've actually been up and around a little bit. (It's not because I'm decomposing on the floor next to my sick chair.)  I've played a little piano.  I've done a few more chores.  And I've virtuously practiced everything in moderation.

A friend pointed out a blog to me that I liked so much, I'm linking to it.


It's not that I have fibro, but the similarities between what I go through with CVID and asthma and what people with fibro experience are striking.  Besides, don't you just love the snazzy birds at the top of her blog page?  She's obviously a person with great taste.

Monday, January 16, 2012

It's the End of the World as We Know It :) :)

I've decided to post a list of the fifty or so things I try to keep on hand all the time, in reasonably large quantities, in case I get sick.  Sometimes it can be a month before I'm able to shop, and my survivalist stash means there's one less thing to worry about, especially this time of the year, when a snowstorm could be an added complication.  This is my own personal list--your mileage may vary.  I buy things when they're on sale, I buy generic, I use coupons--and unfortunately, living below the poverty line means the most important quality of the food is price, not quality or nutrition, although I do try.  I buy things that we will actually eat sooner or later, and I rotate the old stuff to the front of the line.
I really think everyone ought to have a bit of a stash if possible.  You just never know what's coming.  And the most likely disaster, statistically, is something personal--unemployment or illness, for example.  Hope this helps somebody.

rice (brown)
spaghetti sauce
tuna (in water)
meat (frozen)
cranberry juice (home remedy for uti's)
hot chocolate mix (great for the sick lungs)
evaporated milk (for cooking when the milk is gone)
baking powder
baking soda
brown/white sugar
shortening/vegetable oil
peanut butter
chili beans & fixings
sanitary napkins
trash bags
toilet paper
paper towels
eggs (lots, for baking also)
skim milk
wheat bread (frozen)
diet caffeinated soda (so no one gets hurt)
laundry soap
dish soap
bird food
cat food
cat litter
dog food
bottled water (when the lights go out, so does our well)

There's no produce--this is the long-term stuff that I'm hoping to still have after the produce is gone.

I've had one really, really scary asthma attack today.  At least I got some sleep last night.  I've still got dishes to do, but everything else is under control, except my lungs.  So I'm off now to do dishes.  Bye!

Sunday, January 15, 2012

Day 29

Good evening.  I got really bored and read through my own blog this afternoon.  And one thing that struck me--the way I keep saying to myself, I'm getting better, I'm getting better.  What a lot of ups and downs I've had.  I've done this many, many times over the years, but I've never written it all down and then went back and read it before.

I had a cold....I got worse....I seemed to have dodged a bullet....I overdid it last night....It's not going so well....I'm cold and I can't go get a sweater....I think I've turned the corner....Feeling pretty good....I'm feeling better....Going to the grocery store....Now I can get sick again....I am so sick....It's just so exhausting day after day....I'm breathless just sitting here....I'm getting a little better every day....

I put an awful lot of effort into convincing myself that I will be fine tomorrow.

Tomorrow will be Day 30.  I am still not getting anywhere near enough sleep.  I'm trying to keep up with everything at home.  I'm trying not to cave in to the pressure to just be well now.  I'm trying very hard not to wonder if I will still be doing this in March.

Soon it will be time to go grocery shopping again.  Homeschooling is exhausting.  The Christmas decorations are put away.

I just want to go somewhere for a week and rest.

Saturday, January 14, 2012

But how will we make the baked potatoes?

Another day, another little bit of improvement.  Yesterday I got to put away another three small containers of Christmas stuff and clean house a little more.  No matter how many chores I assign people, in a month the house still gets to be a bit of a mess.  There is just no substitute for puttering around from time to time.

I actually had a decent night's sleep last night, which is good.  I'd been getting to the point where I'd lean over wrong and start to lose my balance, and just be unable to do math in my head.

And just about that time, we ran out of aluminum foil.

When you're at the point of being so exhausted that you're nauseous and you can feel your face going white from time to time, it's hard to be reasonable.  Or maybe it's hard not to be very directly (dare I say, even unpleasantly), completely reasonable with people.  So you find yourself saying things like, "well, no matter how sick I got, I never should have allowed myself to lose track of how much aluminum foil was in that little box."  Oh, well, it needed to be said.

So I got up this morning and had to go down to the basement deep freeze for a loaf of bread, and I found myself thanking myself.  I've been known to talk to myself before (okay, I'm probably doing it now), so this isn't any particular cause for concern.  Anyway, I opened the deep freeze and said, "You know, I know you've been sick, and I'm really impressed that on the one or two days you were the least bit capable, you went to the store, and now I've opened this deep freeze and there's a dozen loaves of bread in it.  Good job."

Sometimes I just want to hear it.

Friday, January 13, 2012


Good morning.  No, really.  I had a reasonably good day yesterday.  I actually packed up one popcorn tin of Christmas decorations.  It's always a good day when it's two o'clock and my hair is fixed and my teeth are brushed and the house is all caught up.  No sickness to see here, folks.  Of course, that's an illusion that's completely shattered after I've been up for a quarter hour and then start hacking uncontrollably.  And my voice still sounds remarkably like Mickey Mouse--it has since before Christmas.  But I'm not really in the mood to complain much about it because I'm getting, like, ten percent better every day for three days now, which just cheers me up immensely.

I was as productive as I could be yesterday.  Finally got out all the mail for the last month--at least I've been organized enough to have it all in one place.  Even got out the portable copy machine and rebate paperwork for the twelve-year-old's cell phone, so I can sit and do that today.  Thank you dearly Flylady for teaching me to be organized.

The wind has been howling outside all night.  We still have groceries and pet food and candles here.  I brought in firewood yesterday--twelve sticks at a time, over and over.  Why twelve?  Because I know me--I'd do a gross all at once if I didn't set limits. lol  It's all or nothing.

I've been determined to blog about what it's like to be sick, and this last month has certainly cooperated with me.  Be careful what you ask the universe for.  Well, here's another aspect of being sick I haven't talked about much:

I knew this was coming.  But that doesn't mean I could do anything about it.  I haven't had my head stuck in the sand.  But my husband got laid off at the beginning of the month.  For people who live just underneath the poverty line, there isn't any such thing as savings.  Our bills are usually behind.  I juggle them as fast as I can.  I prioritize--mortgage, used van payment, utilities.  Actually, it's not as if I've been spending any money lately, sitting on the sofa guzzling prednisone and antibiotics.  But I don't spend money anyway.  We're always broke.

So today I get to go to my (fantastically wonderful) parents (who never hold this over me or complain about it) and ask for money to pay our heat bill.  We only have a week's worth of LP in the tank, and there won't be any more until that bill's paid.  It's January, the heat's got to stay on.  (At this point, I selfishly reflect on the effect the cold house would have on my breathing.  I can't wait to be healthy enough to not think about breathing.)

And then I get to ask for money to pay the light bill, which is about to be shut off.  Knowing it's coming doesn't make money magically appear in the bank.

I think it would be nice to blog about the adjustment a family makes to suddenly being better off financially than they ever could have imagined.

My husband goes to school, goes to work (if there is any), plows snow at night after being awake all day.  He's got a job lined up.  For March.  He'll find more work before that if he can.  But it's never enough.

There's no Social Security for me, no food stamps, maybe no unemployment because my husband is graduating in March and you have to quit school to get unemployment.  No benefits for our family because I am not technically disabled.  I should go out and get a job now.

If it weren't for my parents, I guess we'd be relying on candles and the wood stove for light and heat.  I've read about people having to do that.

And people wonder sometimes--why don't we just pay our bills on time?  And paint the house and have some landscaping put in?  Buy a better vehicle?  New furniture?

Some people don't think poor people should be allowed internet access.  Those people should be stuck in a chair for a month.  But being home-bound a lot means the internet brings me the only source of information about my illness, information about homeschooling, printable worksheets, most of what little social life I have, my do-it-myself piano lessons, Shakespeare's Hamlet (there's nothing good nor bad but thinking makes it so), clicking to donate for free, news stories, blogging.  I can see the whole world from here.

I love my internet. :)

At least we're warm and fed here.  Maybe today, a few minutes at a time, I can make some serious inroads into those Christmas decorations.  Makes me feel useful.  And I didn't really want the ornaments clashing with the Easter decorations this spring, anyway.  We'll be having school today. It's good that the girls are mostly old enough not to need a whole lot of supervision.

Maybe I can play a few very simple songs on the piano later.

Goal for the day:  Don't be stupid.  Pace myself.  And be careful what I ask for.

Time to get up, first meds of the morning have kicked in.  See ya.

Thursday, January 12, 2012

Wait, wait, is that daylight up there?

Not too bad today--a little better than yesterday.  I've started bringing sticks of firewood onto the front porch--I've limited myself to a dozen at a time.  A dozen sticks of wood, a bit of tidying the house, and back on the couch.  Rinse, lather, repeat.

It's just after two, and the girls have all finished a half-hour's worth of chores.  No school today (I just wasn't up to it this morning--I slept 'til eight, which brought me all the way up to six hours sleep last night--almost enough to be able to remember my own phone number--and then there were pills to take, and morning just isn't my lungs' best time of day).  Husband was home yesterday to help grade and answer questions about schoolwork, but today I'm on my own--he has his own school, and a CPR class, and probably some snow plowing later.  Don't know when he's planning on sleeping.  But tomorrow, I just might be up to doing school on my own if I have to.

I just don't know how I used to do this when the kids were younger.  Guess I was younger, too.  And every day wasn't always perfect then, either.

At the moment, I've just been up, and now I'm sitting here coughing--it was time for my next dose of meds, and my lungs knew it.

I might go through the mail for the last couple of weeks this afternoon, now that I'm feeling just a bit better.

It's always nice when I'm climbing out of the hole instead of sliding into it.

Wednesday, January 11, 2012

Today's math: 10 minutes = 3 hours

Even the dog sees it.  I get up ten minutes or so every hour or so.  This means I'm better.  I sit down and cough a bit afterwards, but not as much as before.  I am quite happy with this turn of events.

So, if I can clear away half the lunch dishes and step outside and feed the birds, then I can take the dog for one of our nice long walks, right?  After all, I'm up.

Uh, no.

The kids see it, too.  If I'm up for ten minutes, there's no reason I shouldn't be able to stay up for three hours, right?

Now if only I had enough air to be able to explain to everybody that ten minutes is it for now.  But I'm only allowed one item from column A OR one item from column B.  I can either walk around OR talk.  Not both.

I'm thrilled with ten minutes.  It's not even two in the afternoon and I'm dressed and my hair is fixed and my teeth are brushed.  The house is mostly tidied up.  Sometimes I just have to explain things like why I haven't finished clearing all the lunch dishes yet.

I've been sitting so much this month that my legs are a bit wobbly.  If you've ever been in the hospital for a few days, you know what I'm talking about.

It's nice to step outdoors for a minute.

Gotta go--somebody's bringing me an onion and a green pepper and some leftover meat and a knife and a plate so I can cut up things for chili.

Click. Click. Click.

All right, I seem to be doing just a little bit better.  But there have been so many ups and downs this last month it's difficult to really get my hopes up.  Last night I was heard to say that either I was getting ready to improve or I was getting ready to take an ambulance ride to the emergency room.  Sometimes I don't know which it's going to be from one fifteen minutes to the next.  But I don't feel too bad this morning.  Been up once for ten minutes already, without too much of a coughing fit afterwards.  Maybe I can tidy up around here just a tiny bit today.

And there's a major weather front coming--sure hope that doesn't start me sliding downhill again.  We may be expecting a snowstorm tomorrow.  Sure glad I was able to get out shopping last week and I'm just stocked up in general.

I'm solidly in the middle of a freerice marathon.  I'm bored.  Click.  Click.  Click.

See you later.  Click.

Tuesday, January 10, 2012

I'll just die if I don't get this recipe....I'll just die if I don't get this recipe....

Well, I'm still here, sitting at the computer.  Nothing else has changed.  I'm just impatient to start showing some sign of improvement.

Yesterday I donated 320 tsps. of medicine (for free) at 'bigtest.org'.  I was up three or four times for a few minutes, and at least got dressed, fixed my hair, and brushed my teeth, and kept the house tidied up just a bit.  I've been able to assign chores to the kids, so the house isn't too far gone.  I sit here like a spider in the middle of a web and run the house.  I have lists on the computer--household chores, ideas for meals, master grocery list, address list, calendar, homeschooling info, etc.  Yesterday I amused myself by emailing a lot of it to my inbox--now I have it all somewhere besides on the computer and on paper, just in case. :)  I really need to get a life.

I just really want OFF the sofa.

I had another scary attack last night before bedtime, where I was just sitting there and then all of a sudden I couldn't breath.  I'm breathless just sitting here, all day long.  It's exhausting.  I wake up several times during the night to go downstairs for more pills.

I feel a freerice marathon coming on today.

Here's something interesting (surfing other people's random blogs can occasionally be interesting)--


This is really not me--making cupcakes with frosting and cherries on top in a kitchen with a brass rooster-shaped pan hanging on the wall behind me.  So not-me.  I'd love it if you made me a cupcake. lol  But I grew up in a household with a stay-at-home mom, and I'm a stay-at-home mom, if not by choice.  It's been very isolating--I know almost no other SAHMs, so I can only imagine what it would be like to be able to be in the company of other women whose lives are somewhat like my own.

I'm not condemning women who work outside the home--I'd planned to be one.  If I woke up healthy tomorrow morning, who knows where I'd be next year.  I think I'm just attracted to the shiny idea that women could have an actual choice about what they want to do with their lives.  We're all different families, with our own finances, health problems.  We have different children with health problems or educational issues.  We have different husbands and wives with different temperaments, different religious beliefs.  A little tolerance on everybody's part would be nice.  In a perfect world.

So it was cool yesterday to be surfing Mormon blogs of housewives who were just unashamedly taking me on a trip down memory lane, where I woke up in the morning to the smell of waffles and bacon.  I remember playing in the back yard under lilac bushes while Mom was hanging laundry on the clothesline.  The day trips to the zoo, or a museum, or an amusement park, with a cooler in the trunk and a few snacks.  Cookies baking while I was freshly bathed in a a flannel nightgown in the middle of winter, watching 'Little House on the Prairie' or 'The Waltons'.

I was so lucky.

However, if you really want a good laugh, here's another one (to each her own)--


Who wouldn't want a stepford wife?  I want a stepford wife.  At least this week.  I want her to make me chicken soup and change my sheets and go to the store and lovingly take down all my Christmas decorations and box them up and homeschool the kids and wash the windows....

Oh wait, here's another one....I don't think I really want to know how many there are out there. lol  These aren't really all for real, are they?


I think I'll go now before I start feeling the urge to find some pink checkered cloth and a needle and thread and start making matching dresses for everybody. (shudder)

Monday, January 9, 2012

Welcome to my party :)

Still hanging in there this morning.  I just haven't been able to shake this.  I'm not even homeschooling today.  I've barely been able to assign chores and keep on top of things at home.  The Christmas decorations are still up.  I want to play the piano and I can't.

It's been frustrating--I feel like I should be getting medical attention (sounds ridiculous to even be wondering if I should at this point).  But there are so many obstacles.

Not being well enough to drive myself anywhere.

Not having child care--nothing like trying to watch four kids in the ER for hours on end when you're the sick one--bad enough when it's one of the kids who's sick.

Not being taken seriously by doctors--I'm almost always confronted with medical personnel who haven't even ever heard of what's wrong with me, and think I need to just go home and take cough syrup.  I'm given breathing treatments that do nothing for me and then I'm sent home.

Not having enough insurance to pick up a prescription if I'm lucky enough to even be given one.

Not being able to pay off the hospital bills after I get home.

Not being able to do follow-up appointments for lack of money, let alone see a very expensive specialist who would actually understand what's going on with me, or get a bunch of expensive tests done.

And a government that doesn't believe I'm disabled--one doctor said one day that I wasn't sick any more (and I would be the first person ever cured of this disease) and that's it--no social security, no medicare or medicaid so I can go to the doctor and get re-diagnosed....

Funny, I'm feelng really disabled today.  And for the last almost-a-month now.

I am so tired of not being worthy of getting any medical care.  It's just exhausting day after day.

All I can do is try to take care of myself at home, and try to keep myself occupied and keep my spirits up.  That's enough self-pity for today.  Flylady says you can do anything for fifteen minutes.  Not sure that's what she meant, but I've taken that as permission for a fifteen-minute pity-party. :)   I'm off to find something else to do on the internet now....

Sunday, January 8, 2012


Feeling a bit better this morning.  Yesterday was frightening.  I even lost track of how many pills I was taking (something I generally try to be scrupulous about).

Read 'Hamlet' yesterday--the entire thing.  Maybe I ought to read a Shakespeare play every time I get sick--I've always meant to read them all one day.  So many books, so little time.  I'd already seen the movie with Mel Gibson--I highly recommend it, and the play, too.  I think my favorite so far is Julius Caesar.

To the potential delight of everyone here, I seem to have once again lost my voice.  It's been happening a lot lately.  No amount of sudafed is bringing it back.

I'm off to do maybe five minute of personal hygiene and chores before I sit myself back in this chair and force myself to rest. :)  We'll see how that goes before I try to do more.  I'm spoiling to play that Schubert piece again.  Bye.

Saturday, January 7, 2012

My Master's Name

I don't know how often I'll blog when I'm feeling better--since I've started this blog I haven't really had a chance to find out.  I suppose this is one good way to keep me sitting in a chair and resting from time to time, which I really need to be doing a lot of right now.  After the night I just had, and all the meds I'm on, and the lack of sufficient oxygen I'm experiencing, I'll consider it an accomplishment if I'm simply coherent this morning.

I had a dream the other night which I've been meaning to write down.

A rather attractive gentleman asked if I wanted to be his servant.  I'm wondering if this was meant to be a whole other kind of dream ;) , but that's not the way it turned out.

I politely informed him that I already had a master.  His name is 'hypogammaglobulinemia'.

It sucks when I even have to dream about being sick.

I proceeded to explain about my current master.  How he would always insist on first place.  I would never be able to give that first place to anyone else.  My master can always demand primacy over my husband, my children, my parents, my friends, my pets, my home.  I can only attend to any of them when my master allows it.

Sometimes I can see that my master is about to enter his one of his very demanding periods (after all, I've known him for many years now), and I run around and make sure everybody else is taken care of for the next few days.  I stock up on supplies if I have time (actually, I try to stay stocked up all the time, just in case), I make sure all the pets have clean water, food, and litter boxes, and I make sure my house is clean and my chores are caught up.  I warn my family it's coming.  I keep a list of chores posted so they know what will need to be done if my master demands my total attention. 

I prepare for several days or weeks (hopefully not months) of mostly serving only my master.

I might like to attend a social event--a wedding or baby shower, for example.  Even an optometrist appointment.  But I have to get my master's permission first, and sometimes he can be very unreasonable, even cancelling important plans at the very last minute.

Maybe I'd just like to get a decent night's sleep.  But master doesn't care if I'm well-rested.  I don't think he really cares about my physical well-being at all.  He hasn't let me exercise since the middle of last month.  He won't even let me walk about outside in the nice weather today, or play a couple of songs on the piano.  I don't think he cares much about my mental well-being, either.

I might like to go to college, or get a job, or even do volunteer work, or join a club.  But master says 'no', and that's that.

Master wants to be the only one in my life.  He's quite jealous.  So here I sit.

He likes me all to himself.

Cough. Cough cough coughcoughcoughcough....

This might be my earliest a.m. blog post yet.  I am so sick.  It got worse yesterday again, and here I am decidedly not sleeping.  I'm trying not to take too many pills and still stay out of the emergency room.  I'm just sitting here at the laptop working for each breath.  I barely have enough air to croak out a few words at the kids here and there.  As long as I don't start coughing too hard to keep pills down I've got a fighting chance.  And being vertical is way better than being horizontal right now.  Except for the not sleeping part.  The barometric pressure has sunk really low, and that's not good for me, in spite of the lovely weather.

We've got a couple of the girls' friends here for a sleepover this weekend.  At times I'm almost (but not really--I actually like this person and don't like it when she's not doing well) glad that their mother struggles with health problems of her own.  It means the kids aren't fazed by my sitting here at the computer half the night with my bottles of pills.  I've let mine know this morning that they'll be making their own cinnamon rolls.  Probably the brats and dogs tonight, too.  At least I was able to go shopping this week.  And it was fun going to pick the kids up--nothing like unsuspecting victims--er, passengers--on a gravel road with lots of huge puddles on the side to careen unexpectedly toward.  Redneck carwash.  Should have turned around and done the other side, too, while I was at it.

I've finished reading the entire blog :) -- http://wwwwhitechinese.blogspot.com/ .  It certainly makes being sick more tolerable when you can take a three-week virtual vacation to the other side of the planet and meet fascinating people from a totally unfamiliar culture.  Now I'm off to other things--since I've suddenly become unable to practice the Schubert piece that I'd just gotten back into the groove of, I've started watching other people play it on youtube.  Some of it I've appreciated, some of it I've criticized, and one gentleman I've laughed hysterically at, at least on the inside where it couldn't send me into another round of coughing (and I'm quite certain that's not the response he was hoping to elicit--the laughter, I mean).  I've read about hemiola (1-2-3-1-2-3-1-2-1-2-1-2) and cross modulation.  And I've started writing a brief piece of fiction.  These are all things I just don't find time to do until being sick traps me in a chair, and yet I am feeling spectacularly ungrateful for this time.

I've been thinking that I could be a little healthier and still try to take it easy and take lots of breaks and work on these projects, if the universe wants me to so badly.  Bargaining.  One of the five stage of grief.  Although in my case, I think dark, cranky humor should be a sixth stage.  'Specially at three in the morning.

Well, the cinnamon rolls are almost ready.  Yum!  Gotta go.

Friday, January 6, 2012

Here, Here!


I had these same thoughts when I read the original article.  Some people over the years have started thinking of Asperger's as more of a 'difference' than a 'disorder'.  And even an advantage in some circumstances.

Thursday, January 5, 2012


I'm back, and thanks to a probably slightly inadvisably high intake of prednisone & sudafed (and the unseasonably warm and sunny weather), I'm feeling pretty good.  But I'm forcing myself to take a break now that the girls and I have put the groceries away and I've got some of the housework done.  I'm going to take lots of breaks tonight, I am.

This is the kind of dark humor you get when you've been sick for three weeks:  I was looking into the deep freeze, when it hit me--good, the deep freeze is full, the fridge is full, the cupboards are full, and the house is clean.  Now I can get sick again.

Hopefully not.  Maybe the unseasonable weather forecast for the next several days will pull me out of this.

So (and no people or animals were harmed in the making of this movie) we were at the grocery, and I was having one of the twins get bottles of diet caffeinated soda pop (everybody should have one vice).  The girls were very helpful today.  Well, the twin was grabbing a bottle, and she knocked another one, grape soda, off the shelf.  It hit the floor, lid first, the lid shattered, and the bottle took off like a rocket.  Seriously, it had delusions of grandeur and thought it was headed for geosynchronous orbit.  It went way up toward the rafters of the supermarket ceiling, then arced back down and crashed into the next aisle.  I went running around to that aisle.  Thank heavens no one was there.  I'd had a vision of some old woman lying sprawled face down on the floor, unconscious, floored by the remaining liter of grape soda that hadn't sprayed all over our aisle.  Then I had to go find a clerk and explain the mess (she was very nice).  Grape soda all over two aisles.  They're probably still talking about it.  Fortunately the bottle missed the wall of the next aisle--end to end wine bottles!

Oh, and it's Maurizio Pollini's seventieth birthday today!!  Happy Birthday Maestro!!

Girls' Day Out

Wish me luck, I'm going to the grocery store!  Just one store.  And chinese food--we've been craving chinese food for a month now.  The girls are coming too, so they can help push the cart, grab all the gallons of milk, load and unload the car, etc. 

Sometimes I remember how hard it used to be to be sick when they were toddlers.  I had to dress 'em, feed 'em, change 'em, go to the store, load 'em into the stroller, maybe push a cart while I was pulling a little red wagon at the same time (picture two baby car seats side by side, handles up, heart monitors looped over the handles, a two-year-old with a leash tied to the wagon handle, a diaper bag over my shoulder, and holding the five-year-old's hand), load the cart, load the car, and then unload the car and put it all away.  Sounds a bit challenging even for a healthy person who isn't trying to breath through a straw, now that I look back.

Everywhere I went, I used to hear the same thing:  'You sure have your hands full'. :)

Now I'm off on a tangent.  It's my tangent and I like it.  Funny things people say when you go out in public with four little girls.  I don't remember being particularly upset by any of it (even the nosy people), but some of it was funny.

Are you trying for a boy? (nope, not really)

Are they all yours? (yep)

Did you use fertility treatments? (nope, just married into a family with lots of twins and got lucky)

Does your husband want more? (actually, I'd talked him into three lol)

Are they twins/triplets/(and occasionally when seated) quadruplets?

Are you amish? (while we were all wearing shorts and t-shirts)

Isn't it a school day? (we're homeschoolers)

(From a very nice Asian man who barely spoke English) You go try for a boy now!

Do you know what causes pregnancy? (no, do you have pictures?)

(About the twins) Are they identical? (yes) Are they a boy and a girl? (dead silence)

And my personal favorite--you were smart to have them all so young (I was 35 when the twins were born)

Anyway (tangent over), yesterday I woke up with a bit of a sore throat and my nose started running again.  My ears are still popping from the infection from before.  Now I'm back on the prednisone, and antibiotics and sudafed. :(  I think I'll take two courses of the milder antibiotic this time.  Not to worry, my doctor had put me on this particular antibiotic for weeks and months at a time in the past. 

I'm not feeling too bad at the moment, but I'm going to have to try not to push it.  I was having fun yesterday playing the piano, and I totally cleaned out my fridge and four kitchen cupboards.  I need to remember to take more breaks and catch my breath.  The internet's great for that.

And I'm off to the store....

Wednesday, January 4, 2012

You might be a little autistic....

This is the kind of thing that happens at my house:

The kids are in the room with me.  We're all watching television when the commercial starts.  There is a fine-looking, almost-completely-naked man climbing out of silk sheets where a woman still sleeps.  My attention is suddenly Completely Riveted on the television.  The children are watching.

"Wait....wait...." I'm saying distractedly.  "That's....that's........is that....is that Mendelssohn?"  (What do you mean you weren't listening to the background music?)

Free at last!

Hello!  I just read something that I thought was especially worth sharing:


It was the post dated 12/30/11.  And yes, I've noticed that the word 'liberate' has just popped up again. :)  (see the post before last)

I'm feeling better today--yesterday morning I was nearly dead on my feet (and it had scared me to think that was going to be the high point of my day lol), but throughout the day my energy level just kept going up.  And then I slept for ten hours straight last night--first decent night I've had in a while.  Still a bit breathless and wheezy, but at least I'm back to playing some easy piano music.  Kids are being homeschooled, chores are getting done, and with any luck, I'll be cleaning those kitchen cupboards this afternoon.

Everybody's apparently finished being sick, and they're back to bickering.  Not sure which is worse, being sick and cleaning the bathroom after everybody else, or the bickering....  No, being sick was definitely worse.  Perhaps later if they can't get along I'll be putting some of that healthy energy to use on the cupboards. (evil grin)

Back to work now....

Tuesday, January 3, 2012

Day 17

Yes, I've been sick for 17 days.  Hardly the first time.  And yesterday really, really counted.

Almost everybody in the house has had a stomache flu now.  It started Saturday night (after we got home from dinner with my family, fortunately) with child number one.  Then Monday morning it was me.  I managed to get dressed and let the dog out and put my hair back (sinking feeling that I was going to appreciate not throwing up in my hair any minute) before it hit.  I'll spare everyone the details--I'd like this to be a family-friendly blog.  I'll just say that putting the hair back was a good idea. 

I wound up wrapped in two blankets on the sofa.  Next thing I knew, my husband was home (from breakfast with his dad) with the same thing.

I'm sort of all right now--just exhausted.  Hadn't really planned on going off all my meds at once yesterday, either.  And two more children got sick last night.

I had just gotten the house all cleaned up Sunday night, thinking I'd work on kitchen cupboards yesterday since I haven't been grocery shopping lately and they're as empty as they're going to get.  Good time to clean 'em.  But now the house needs more cleaning and I'm behind on all my chores.  It's seven-thirty in the morning and I'm a morning person, but I'd like nothing better than to go back to bed.

Time to go reboot the laundry....

Sunday, January 1, 2012

Who am I to be brilliant?

I'm not normally much for inspirational quotes, so my posting of this is a measure of how much I like it.  It was originally written by Marianne Williamson, and it came to my attention when it was mass emailed the other day by Jonathan Roche, a fitness guru associated with Flylady.  Great quote for starting out 2012!

"Our deepest fear is not that we are inadequate.  Our
deepest fear is that we are powerful beyond measure. 

It is our light, not our darkness, that most frightens us. 
We ask ourselves, who am I to be brilliant, gorgeous,
talented, and fabulous? 

Actually, who are you not to be? 

You are a child of God. Your playing small doesn't serve
the world.  There's nothing enlightened about shrinking
so that other people won't feel insecure around you. 

We are all meant to shine, as children do.  We are born
to make manifest the glory of God that is within us. 

It's not just in some of us, it's in everyone.  And as we
let our own light shine, we unconsciously give other
people permission to do the same. 

As we are liberated from our own fear, our presence
automatically liberates others."

~ Marianne Williamson