What Did You Say?

Here are a few good links about CAPD, thanks to someone on a message board.


This first one is a good example of what I hear in a crowded environment, like a party:

http://www.exploratorium.edu/exhibits/ladle/index.html


This next one is a well-developed, informative site:

http://apdus.org/


And finally, a good site for accomodations and coping strategies:

http://www.squidoo.com/auditory-processing-disorder


I'm doing pretty well--still a few minor coughing fits, but I've been shopping and didn't even have to take prednisone.

I'm glad that spring is coming soon--my kids are getting 'cabin fever'.  Many days they can't go outside at all.  One of them was complaining today about not getting to go anywhere lately.  And that's when the guilt hit.

It's not as if I decided one day that I would be sick.  But sometimes I still feel guilty.  As if it's my fault that we don't have enough money for the kids to be enrolled in extracurricular activities, or to go to musems or shopping malls or movies.  My fault that my husband has to work and go to school and be gone so much of the time in his quest to make enough money to keep a roof over our heads.  My fault that I can only drive to a few places and if some activity doesn't take place at one of those, too bad, I can't get there.  My fault I don't get out and meet people so that we'd have more of a social life.  My fault I 'scare' people away by being sick and having all the neurological challenges that I have.  I started to think, if only I could get a job....

I shook myself out of that funk pretty quickly--it's usually not too difficult when I'm being reasonably healthy and I've had a decent night's sleep.  I went back to housework and the piano.

I've gotten quite obsessed with Schubert's sonatas lately.  Oh, here's a link to a wonderful pianist I've just discovered:

https://www.facebook.com/#!/photo.php?v=483846457988

Christian Zacharias. :)


And I'm off to practice.  Good night!

Oh, No, I Kicked the Ball....Now What?

This explains a lot:  http://www.sciencecodex.com/autism_affects_motor_skills_study_indicates-86111

The scientists at Washington University School of Medicine (St. Louis) conducted a study and concluded that autism and clumsiness go together.  I'm thinking of the stereotypical geeky child who never socializes and keeps their nose in a book all day long and isn't any good at any sport whatsoever. 

I was that clutzy child.  They wanted to hold me back in kindergarten because I couldn't open my own milk at snack time or tie my shoes.  I sucked at sports.  I couldn't walk a balance beam.  I couldn't ride a bicycle without training wheels until I was twelve.  In high school I was failing PE (and still having trouble tying my shoes).  I couldn't put a basketball in a basket, or hit a baseball, or serve a volleyball, or kick a kickball (how on Earth can you miss a kickball when it's just sitting there?). 

It was horrifying then, but it's almost funny now--once I somehow actually kicked the kickball and then couldn't figure out for the life of me which way first base was.  In high school.  I'd never actually kicked or hit anything before.

I once spent hours and hours throwing a tennis ball at a wall over the course of several weeks because I was sick and tired of not being able to toss anybody anything or catch anything for any reason.  I did improve after that--I vividly remember somebody throwing me a closed bottle of liquid paper in typing class and my (very secret) pride at having caught it.

These days I still trip over my own feet in bright daylight.  I run into things that aren't moving.  I drop things.  Sometimes the same thing more than once.  All right, more than twice.   Occasionally accompanied by inappropriate language.

Maybe they should put this on the new DSM-V list of symptoms.  (Not the inappropriate language, I mean the clumsiness.)



I'm still recuperating--most of the asthma attacks now are more minor ones.  It still left me breathless the day before yesterday to shop at Wal-mart, but at least I didn't have to take prednisone.

I'm off now to play that Schubert impromptu yet again.  I'll try not to trip over anything on the way there....

More Soda!

Well, this is what I thought would happen if I started to feel halfway decent....I've been too busy doing things to sit and type much.  I've only had to take prednisone twice in the last week.  I went out shopping the other day and only had two asthma attacks while I was doing it.  And I've exercised (yay!)--twenty minutes a day for three days, but not all at once, only a few minutes at a time, and easy stuff.  The easy stuff leaves me breathing hard enough.

I probably wouldn't be typing today, but I woke up with a horrible migraine.  After almost two hours, the (four) Advil and caffeinated soda seem to have taken the edge off, as long as I don't try to do anything stupid like move.  I missed my 'aura' last night--the incredibly tired feeling before bedtime that signals it's time to take Advil before bed so I don't have to wake up with this.  I'm now to the point where typing isn't too much movement.  Seriously, running my finger over the mousepad was a lot of work an hour ago.  I'm lucky it's getting this good--it was so awful when I woke up that I was afraid it was going to be completely out of control for the next twelve hours or so.  There's hope I'll be back to playing the piano before lunch.

I'm going to go drink more caffeine....back in a second....

Okay, I'm back.  Lots of caffeine helps.

Not much happening here.  It's all right with me if I don't have the debilitating illness to talk about endlessly.  I'm still on my house cleaning binge.  I've cleaned all the windows, pictures, light fixtures, etc. downstairs, moved a lot of furniture, cleaned a lot of shelves.  We have a dumpster for trash pick-up and two smaller ones, and I've been filling all three every week, which is a sad little commentary on how much cleaning needs to be done around here.  If you want a spotless house, I don't recommend having children and getting sick.  Although the children are great for slave labor....

I've also played a lot of piano lately--I got kind of obsessed with Schubert's sonatas.  I'm taking a break but they're calling me so I'll probably be back soon.

Since I've run out of anything interesting to say, I'll just quit talking now....

Time to go wake up the kids for school anyway. :)

Bye!

What About Me?

http://chroniclesoffibro.blogspot.com/2012/02/what-about-me.html

This is a good one--so good I'm taking a break from my Schubert-playing/house-cleaning binge to mention it here.  I've been in the state described in this blog post for the last couple of months--rebelling against the idea that I should apologize for being so sick....



I finished playing through one of my new Schubert sonata books from Christmas--fifteen sonatas.  I only had one asthma attack today.  Got a nosebleed several times, though--that's not normal for me.  But I've gotten so much housework done I won't have anything to do tomorrow. lol  Two of the girls went on a sleepover that started this morning, so it's been a quiet.  The other two watched old "V" re-run today.  I introduced them to "V" a few months ago, so they'll grow up to be fine examples of good geekdom.  Did you ever notice that the same guy that did the music for "V" (Dennis McCarthy) did "Star Trek: The Next Generation" as well?  They used some of the exact same music for both series.  And we quite clearly heard original Star Trek bridge sounds on one episode today.  Those sounds are everywhere on television.

All in favor of making the ST:TNG theme song our new national anthem?

'Night!

Now what?!!

Don't know what it is this time, but I've been wheezing since the middle of this afternoon, and it's almost bedtime now.  I'm thinking I'm going to be all right, it's just another minor setback, but I did end up sitting at the computer for a couple of hours earlier, suddenly unable to help the girls with their schoolwork.  Homeschooling while fighting for air is not easy.  I've got it set up so the girls can mostly do their own schoolwork when they need to.  We're also on an almost-year-round schedule, so that we can take days off for my illness, as well as errand days.  Since we live a little way from the nearest city, it's easier (and cheaper given the price of gas) to run all of our errands in one big trip.

The girls all know at 9 a.m. to get out their schoolbooks, which are always put away from the last school day.  Organization is the key to homeschooling (and keeping house) with a major illness.  Everybody has to know what they're supposed to do, and when.

With any luck, I'll wake up feeling better in the morning.  'Night!

X X X

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....



Later!

...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.

Bye!