Saturday, December 31, 2011

Same old, same old

Feeling good today--better every day.  But last night I had a setback. We were at a restaurant when the asthma attack started.  By the time we got back to my parents' house to do our Christmas gift exchange, I was really starting to have trouble breathing.  Too much excitement.  What was interesting (and admittedly, it was a busy time when people weren't going to be very observant) was that only two people noticed that I was getting into trouble.  I took an informal poll the next day.  My husband noticed even in the restaurant.  And my mom noticed when we got back to the house.  She said I was just getting very quiet.  Everybody else was surprised to learn I'd been in trouble.  Nobody saw me run into the next room for prednisone.  I was all right after that, and I'm fine now.  Well, relatively fine.  Better than yesterday.  I played the piano (easy stuff) a bit at my parents' house, and the exertion had me shaking after a while.

But what I have seems to be pretty invisible.  I can be getting into real trouble breathing and keep it my little secret.  I can see how somebody would think I was lazy--suddenly I'm not helping with anything; I'm just sitting around.  I've always tried to keep this to myself.  I've been practicing for years.  Employees, in-laws, teachers, friends--I never wanted anybody to know I was sick.  And now that I've come out in the open, the results are less than encouraging.  The (few) people who understood before still understand.  One person who didn't really know has been encouraging.  But so far, the people who thought I was a lazy bum before have made it quite clear that they still think so.  Many people have pretended I didn't say anything.  So not much has changed, except I can now turn my attention to other things besides trying not to appear sick....

So if you're thinking that coming out of the closet about a chronic illness will result in more understanding and popularity, I wish you well.  Honestly.  It's bound to happen to somebody.  Go for it.  And it if works, let me know what you did.

Having a good day today anyway.  Playing with my 3-year-old niece fifteen minutes at a time.  Try explaining to a 3-year-old that you have to stop because you just can only keep running for so long, when the last time you saw her you had unlimited energy.  We'll all be going out for dinner later.  I managed to get some housework done this morning before we left, so things will be almost caught up when I wake up tomorrow morning.  I was happy with the amount of stamina I managed to have to work with.  Some not-so-good news--my husband got laid off from his job yesterday.

It's New Year's Eve.  Have a Happy New Year!

Friday, December 30, 2011

Choosing an Online Pharmacy

Good afternoon!  I've survived dinner with the in-laws (including walking into the restaurant from the car and basically falling (literally falling) into my chair at the table).  I'd thought at the time that it might have livened up an otherwise reasonably tame dinner if somebody spread the rumor that I'd been drinking all afternoon.

It was quite a challenge getting everything done and mobilizing the troops to leave the house this morning, but now I'm at my parents' house where I can take it easy.  Tonight we'll be having our Christmas dinner and gift exchange.

I've noticed some interest in my post about getting drugs from the Philippines.  I hope that post was about what people hoped it was about. lol  I am now going to post a few of my personal suggestions for using an online pharmacy.  Disclaimer:  Please keep in mind that I'm only buying prednisone and antibiotics myself, so I have no knowledge of other substances or the legality of purchasing/using them, nor do I advocate breaking the law.

And here we go:

1.  I would only recommend this for someone who has an already-diagnosed medical condition and who is looking to buy pills that they've already taken in the past.  Now is not the time to be incredibly stupid experiment.  I've had my diagnoses for many years, and I was under medical supervision for a long time before poverty and loss of health insurance forced me to take matters into my own hands.

2.  Do some research about online pharmacies.  And find out the laws where you live.  I wouldn't want anyone to get into trouble.

3.  Choose a pharmacy that sells a variety of medications, not just narcotics and sex aids.  Even if you're looking for pain pills, a reputable pharmacy probably sells other things as well.

4.  There are patient inserts online.  You should also check for drug interactions.  My own experience has been that pharmacists are highly educated people who don't usually mind questions.

5.  When your pills come in the mail, they should look just like your old pills.  If you don't know what they're supposed to look like, there are probably pictures online, too.

6.  Keep your pills in their original, labelled packaging.  Not only does it help to avoid mistakes, but having the names of the pills gives other people the message that you're not abusing prescription medication.

I hope this information helps.  Now I'm off to cheerier things....

Thursday, December 29, 2011


Feeling pretty good today--I was up for forty minutes before a minor asthma attack this morning.  I addressed a couple of gifts to go out with us to dinner with the in-laws tonight, and I made a new discovery--my handwriting sucks.  I'm assuming it will get better.  It used to be neat before I got sick.

I've lost six pounds in two weeks.  If that doesn't prove I'm sick, I don't know what does.  Normally I can't lose six pounds for love or money.  Maybe if I was gored by a bull.

I'm going to say it officially--this is one of the worst illnesses I've ever had--up there with mono or strep throat.

One of my daughters is making Christmas cookies again, to take tomorrow to my family's Christmas, and another daughter is going to make fudge.  Fortunately we'll probably just hang out at my parents' house, because I'm absolutely not up to going anywhere.  I'm a little worried about walking from the car to the restaurant tonight in the cold air.  I can't even walk and talk on the phone at the same time yet.  At least I feel way better than yesterday.

Wish me luck!

Crocodile Eats Lawn Mower!

That's the kind of television headline on CNN that makes me look up from my computer first thing in the morning.

Here's another picture that just kinda struck me:

Some days are like that.  It's the picture that went along with this article: .

Wednesday, December 28, 2011

Bain Dramage

Well, I think I've really turned the corner here.  It's the middle of the afternoon and I'm dressed and the house is under control.  I can be up and around for twenty minutes before the room starts spinning.  What's even better is that I'm starting to have periods of time during which I actually believe that life, at some unspecified point in the future, might be worth living again. 

I don't really know, but I think this must be what it's like to come down off of a two-week drinking binge.  It was a couple of weeks ago when I first got sick.  I remember taking a quiz online with my oldest daughter ( when this first hit, and not being able to remember the elements of the periodic table.  I've checked (H, He, Li, Be, B, C....)--they're back now, so it wasn't anything like early-onset Alzheimer's.  My brain just stopped working temporarily when the virus moved in.

I think this was the actual flu.  I'm hearing about more and more people getting sick.  My mother has it, and it looks as if my sister, who's on her way to visit, might have it.  She's travelled a ways to get here, so if she has it, it's everywhere.  I hope I'm wrong--she's a great sister, and I'd have to be really angry at somebody to wish this on them.

I'm going to go do a couple more things and then come sit back down.  Talk to you later!

Tuesday, December 27, 2011

It's beginning to look a lot like Christmas

Everything outside was covered with a pretty layer of icy snow when I got up a few hours ago.  Now the snowflakes are falling faster and they're getting bigger.

I could be feeling worse.  I only had to get up once last night, and I managed to get some sleep.  I'm breathing better, but it still leaves me gasping to walk across the house to get something.

I feel horrible, but I feel better than I did two days ago.

Last night I developed a swelling under a tooth.  It's the same tooth I had a root canal done on a couple of years ago.  That tooth hasn't felt right since.  Last night there was some kind of an abscess that had to be popped (I'll spare you the details on that), and I also had a bit of fluid coming out of my ear on that side.  But it all feels better now.

Dinner with the in-laws in two days.  I'm going to try to rest up so I can make it to that, and see my own family the next day.

It's been a struggle just to keep cheerful.  Awake, even.  I've had periods where I could barely stand.  People say things to me and I have to stop and try to figure out what it was they just said.  What a marathon session this last week has been.

I managed to get something out of the deep freeze for dinner tonight--and I noticed there was plenty of food, which is good, because I'm supposed to go grocery shopping this week and it's not going to happen.

I'm going to go rest some more....

Sunday, December 25, 2011

Good Morning!

No, really, it's a pretty good morning.  It's Christmas!  And I am feeling better.  I've been up since five because of the coughing, but my temp's down to 101.  I'm planning to hopefully spend a lot of time today sitting around resting, but I'm feeling just decent enough to be sick and tired of sitting at the computer.  Every once in a while I get up and do few things--as in, I wait until one of my medication doses is working, go to the bathroom so I won't have a small accident from the coughing, and work for a few minutes before sitting back down.  And this is way better than I felt yesterday.

I'm just not good at sitting.  I want to go out and take a hike in the nice weather or something. lol  I'd be lucky to make it to the mailbox.  And television is usually not one of my favorite things.  I want to go play the piano, but it's just too strenuous yet.

The girls are up and have their Christmas presents.  The twelve-year-old got her first phone--my old one.  I've just spent a week pretending that my old phone was broke, because she's always using it and I couldn't let her find out we'd switched.  We're mean parents--we pretended that my husband's new air compressor was her Christmas present, and then one of her smaller presents 'called' her while she was opening it.  It's okay--she's a meanie, too, so she understands. ;)

We've been having people call and text her all morning--I'll resist the urge to put her number up here.

The twins got little indoor pup tents that they've set up in the dining room--we haven't seen them in the family room all day.  And yesterday the entire family got a wii fit--the 'balance board' for a nintendo wii.  I highly recommend giving a wii fit for a present on Christmas Eve morning--by the time I toddled up the stairs last night, everybody was fast asleep from the exhaustion.

The oldest daughter got her very own nice warm blanket for downstairs--just like her dad's, which she's always coveting.  She's only been warm a few times since birth.

We have Christmas candy, and we had cinnamon rolls for breakfast (from the discount rack at the grocery the other day).  Santa always leaves candy canes on the tree overnight.  There's a ham defrosting.  I've learned to take it easy at times like this.  Christmas doesn't just have to be one day--it can be a week or two--like Hanukkah.  I didn't make eggnog yesterday--so what, I can make it today.  I can make fudge tomorrow or for the extended family gathering this next weekend.

Better to have a reasonably cheerful, healthy mom and no eggnog.  This sounds easy, but it's actually taken me several years of parenting & illness to figure this out.

It looks like we might get snow here in a day or two, but we're stocked up nicely, so no worries there.  Didn't really want to go grocery shopping right away anyway.

I'm looking forward now to an opportunity to just rest and get better these next few days.  And I spoke to my mother this morning--she sounds pretty good compared to yesterday.  My youngest twin finally slept through the night last night without so much coughing.

I hope everything I've said this morning has made sense after the week I've had. :) 

Merry Christmas to All!

Saturday, December 24, 2011

I'm going to die....

....but probably not today.  I'm starting to feel just a tiny bit better.  One thing about an immune deficiency--your body can just give up the fight against some infection before the fight even gets started.  And your temp can drop right down to normal while you get sicker and sicker, because your body isn't fighting back. 

This afternoon it began to seem as if I'd finally started to rally just a bit, so I took my temp--102.9.  Which explains my feeling that today I should maybe have asked to go to the emergency room.  Also might explain all the pretty colored dots I've been seeing swimming in front of my field of vision these last couple of days.

I would have posted this morning, but all I could have done was whined, and I wasn't sure I was going to be able to make any sense....

Friday, December 23, 2011


Well, the fourth kid is coughing now (although nobody's gotten anywhere near as sick as me, fortunately).  One child has been coughing for a couple of weeks, but she's still running around mostly.  This cold seems to have a 'double tap' approach (see "Zombieland" sometime lol).  My mother just told me today she's had one cold right after the other one, and that's what's happened to everyone at our house.  But I could only talk to her on the phone for two minutes this morning.

When I decided to write about what it's like to be me when I'm sick, I didn't realize that I was apparently asking the universe to serve up the entire 7-course meal.  I think they get it now--tomorrow can I write about how quickly I recuperate?

I've spent the whole day feeling like I'm sucking air through a tiny little straw.  My voice is gone, and so is my ability to do most things for myself--an icky combination.  The dog won't even get out of my way because I'm not scary enough.  Every half-hour or so I have a terrible coughing, gasping attack that ends with me running to the bathroom.  I had a low point tonight where someone was in our one bathroom and I had to run out the front door to be sick.

I've scared the twins several times today.  They've both come up to me tonight and asked if I'm going to be all right, and all I can say is 'eventually'.  If I have enough breath to get out that long of a word.  The older two are more accustomed to this.

I have taken an enormous amount of prednisone, which is all I can do.  And sudafed and antibiotics.  No way I could take myself and four kids to the ER, nobody to babysit most of the time, not enough insurance (or cash), no family doctor.  It's incredibly frustrating to think that I should probably be an inpatient right now, and that I don't qualify for any kind of disability or Medicaid. 

Did I mention I buy prednisone from the Philippines?  Maybe I'll write more about that later.  For now I'll just say, if you consider that route, do your research on those companies first.  I did, and it's been a godsend.  (If you think this week sounds bad, you should have seen me in years gone by with no pills, or doctors who didn't want to prescribe anything but cough syrup.)  And I've been taking these pills for years--I wouldn't try to treat some other condition all by myself without a thorough understanding of what's the matter with me.

And I haven't even gotten started on how Medicaid hasn't let our children see our family doctor in quite a while--even this week, I've been emailing back and forth with them, trying to get it straightened out.  There's a whole other blog post.  One which almost would've included profanity this week.  If any of my kids gets sick like me, your tax dollars will be paying for them to go to the ER instead of our regular doctor.

Anyway, all I can do now is wait this out....

The girls made Christmas cookies today.  They'll make great mothers someday--they're getting practice now.  It's been difficult today to keep my spirits up today.  We're lucky all the family Christmasses (sp?) are next weekend.  At least I hope I'll be reasonable well by then.

I'm going to bed now.  If I can get a decent night's sleep, I think that'll do me a lot of good.  I can barely see the floor in front of my feet tonight.  Hope this post makes sense.


Barometer's Up, I'm Down

Darn it, I took a turn for the worse last night after finishing up everything yesterday--went to my mother's house (and I was good about taking it easy while I was there), stopped at the grocery store for a few things (and the girls were really good about helping me load up the cart and put everything away).  I even felt so good that I walked the dog to the end of the lane last night in the nice weather we were having.

This morning I am really sick.  As in, first thing in the morning I have to get to the bathroom before the coughing starts.  I saw it coming last night and put my computer and drinks and pills and tissues at the table because I just knew I wasn't going to be able to get all that stuff together in the morning.  My number one goal this morning is to just sit long enough to keep the coughing under control so I can keep all my pills down.  No getting dressed, no housework at all.  I'm cold and I can't go get a sweater.  Can't put the milk back in the fridge.  Once I start being unable to keep the pills down, I am on my way to the hospital.  Not where I want to spend Christmas.  I've managed to stay out of hospitals for the most part these last few years, but this is definitely one of the close calls.

The exhaustion from not getting enough sleep all week (and just plain not getting enough oxygen) are starting to get to me.

It was a good day yesterday.  I was tired and had to rest a lot, but being at Mom's house was like a small Christmas celebration.  They always spring for lunch (I took a kid and picked up sandwiches nearby), and there are decorations and she was playing Christmas music.  The kids and I cleaned up--I really didn't do much.  Got to chat with one of the old neighbors outside.  I played one song on Mom & Dad's piano, but that was tiring.  Haven't played all week at home.

The streets and grocery stores were really crowded.  Reminds me of why I like living on an island. :)  Got lots of milk for eggnog.  My kids have already given me one of the best presents I could get--doing chores last night and not arguing too much.  Without their help right now I'm sure the house would look as if it had been hit by a tsunami.  They're planning to make sugar cookies today (definitely time for me to start their Christmas homeschool vacation today).  They know how to make the fudge and eggnog, too.  We've even got a ham for Christmas Eve.  Glad I'm not entertaining extended family here this year.

It's been a little over a half-hour since the pills.  Hopefully another half-hour before anybody gets up--talking to anybody makes me cough.  Had to wait until after husband left to take the pills.  I could hardly even answer him when he talked to me.

And now the kids are getting up and all I can do is shake me head at them and cough.  Gotta stop typing now.

Thursday, December 22, 2011

Who Needs a Barometer....

....when we've got me?  Pressure's back up now, and I'm breathing fairly well.  This is where I expected to be yesterday morning.  Don't know if we're going to clean Mom's house today--I was wondering last night if a third child might be coming down with the cold.  And she's the one that we think might also have my immune deficiency.  This cold is a nasty one.  At least Mom's already got it--I mean, not that I'm glad she's sick, it's just that we don't have to worry about infecting her (or I'd stay home).

At least I don't do my barometer impression when I'm healthy--I have to be fairly sick to begin with.

Donated 10,000 grains of rice at FreeRice yesterday.  The 'world flags' category is a trip when you don't remember pictures of things.  Math & chemistry were much easier.  If I'm home today I might do geography--another challenging category for me.

And I'm off to start the day.

Wednesday, December 21, 2011

I'm Laughing on the Inside

It's not going so well.  I'm backsliding.  My breathlessness has gotten to the point where I can only be up off the couch for a couple of minutes once or twice an hour, and it's hard for me to talk.  I'm taking prednisone and sudafed every two hours now--more than I should be, but I don't want to end up in the hospital.  I'm trying to keep on top of the housework--the girls are a big help with that, and with bringing me things and taking care of things that pop up.  We're watching a comedy, but I can't laugh out loud because I'll just start coughing uncontrollably
The air pressure has been low all day.  Low pressure often does a number on me.  I might have been all right except for that.  I could actually be worse.  I probably just have to hold my own until the front passes.

I really want to help my mother clean house tomorrow, but it's starting to look bad.  I'm glad I have a nice mother who understands.  I'm glad I'm all ready for Christmas. 

I've done maintenance on the computer, cleaned up and deleted some stuff, and today I've donated 340 tsps. of medicine on .  Maybe I'll do FreeRice next  I also got my new flylady calendar ( ) all set up for next year, transferring all of the birthdays, etc. from last year.  No, I don't get paid for plugging flylady. :)  Flylady is free and she helps me get organized--it doesn't just come naturally. (Some days it doesn't come at all).  I try to save these kinds of jobs for the next time I get sick.

It hopefully keeps me from getting too depressed or frustrated or bored.

Just a quick note....

Still doing okay this morning, but I overdid it a bit last night trying to clean house and bring in some firewood.  I'm still very short of breath--just about the same place as yesterday morning. 

One daughter made cheeseburgers for dinner last night, one made a chocolate layer cake, and the other two washed dishes.  It's no wonder I used to get sicker more often when they were younger--I had to do it all myself. 

Tomorrow we're supposed to go help my mother clean for Christmas--at least I should be able to drive us there and help a little.  Mom has rheumatoid arthritis--people with CVID are statistically more likely to have relatives with RA.  She's in a wheelchair these days.

It's almost time to start school.  Bye!

Tuesday, December 20, 2011

And I'm off and running! Uh, walking. Slowly.

It's a good morning when you realize that you made it all the way through the night (even if just barely) without having to get up to take pills.  Even better when you realize that you're doing well enough to spend five minutes tidying up the house, checking the pets, etc. before you sit down to your breakfast of peanut butter on wheat toast, antibiotics, sudafed, and prednisone.  (I vaguely remember that a healthy meal is supposed to contain lots of different colors.)  I might be able to get a bit more done around the house than I did yesterday.

This was a mild episode for me.  It could have been a lot worse.

Don't know if we'll be homeschooling today.  I dragged myself through it yesterday, but now a second kid has gotten the cold.  One way I cope with homeschooling and illness is by having a year-round schedule so we can miss days and still get in the requisite number by the end of the school year.  And I take advantage of this schedule when more than one kid gets sick--we have very few absences here.  I'm sure they learn better when their temps' are under 100 and they're not huddled under blankets.

I'm off to get some work done now!  (But carefully, not too much, too soon.)  Later!

Monday, December 19, 2011

Boo! Heh-heh. Boo! Heh-heh. Boo! Heh-heh. Boo....

I'm determined to portray what it's like to have this illness, even though I've generally kept it to myself except for a few people close to me.  Hopefully I'll make sense with a temp over a hundred and four advil, two sudafed, 20-40 mg. prednisone every two-three hours, antibiotics, and diet (caffeine-laden) soda all running through my system at the same time.

I think my will to live is coming back.  You never know with me--tomorrow morning I may wake up with pneumonia.  Seriously.  I often get really sick just as I'm getting over a cold.  And it is a cold--both my parents and one of my daughters have it now. 

I started the antibiotics early enough that I might have beat it this time, and I've taken a lot of prednisone today.  I've also taken it easy and stayed out of the cold air--one of my triggers.  This works much better than years ago when doctors used to forbid me to take pills until I got worse, and when I used to just keep going no matter what until I ended up in the hospital.

It's wonderful that the girls can help with the chores.  Any one of my girls could run the household by herself if she put her mind to it.  I have a list of chores posted on the piano.  They can even cook well enough to get by.

I did have one bad episode right before dinner.  I was sitting on the couch (my temporary home within my home) when the asthma attack hit.  I managed to croak out 'asthma attack' (which none of the kids heard--I'm thinking they would have at least heard the crash when I hit the floor if it was serious) while I was reaching for my prednisone on the end table and the diet soda nearby.  I recovered pretty quickly after that.

We're watching old Star Trek re-runs, and it's the same joke I've heard a hundred times, and I start laughing.  Apparently my weird sense of humor encompasses repeated jokes.  I'm like a baby--take the blanket off your head for the fortieth time, and I'll just laugh again.  Oh well, humor is supposed to be good medicine, too, if I don't laugh myself into another asthma attack.  It's a good life when I start to feel better and there's Star Trek and my laptop, and earlier one child made chocolate chip pancakes for dinner.

Good night! (hopefully)

Oh, you want me to write you a check! I thought you wanted money.*

I'm mostly stuck on the couch sick today, so I don't have anything better to do than blog, and I just read a letter in an advice column that struck me.  Here's a link:

In case you don't want to spend time reading, it's about a divorced woman with three children who works full-time, is looking for a second job, lives just above the poverty line, gets no government or any other kind of assistance, and doesn't have enough to eat.

There are a lot of people like her.  I don't know her, but I feel for her because my family also hovers right around the poverty line, and we almost never qualify for any kind of assistance, often because of my disabilities. 

One day a few years ago, a doctor decided that I was cured (which would be ground-breaking--I would be the very first with CVID to spontaneously recuperate).  That was it.  Right through the cracks I went, dragging my family down with me.  We haven't managed to climb back out yet, because the way you prove your disability is by seeing a doctor frequently, when you're sick.  It also helps to get a lot of expensive tests.  If you can't afford the visits and the tests, too bad.  You are not officially sick.  Blood tests and x-rays and hospitalizations and a diagnosis from the past don't count, even if your disease has no cure.

I felt for the stranger in the letter because if it weren't for the help of extended family, we also wouldn't have enough to eat.  Utilities would eventually get shut off.  One day we'd most likely find ourselves homeless.

You see, at the end of the month, after the mortgage (on a decrepit house--an apartment would cost more), the used-minivan payment, gasoline, the heat and electricity, health insurance we can't use because we can't afford the copays and deductibles, term life insurance (we don't expect government assistance if the unthinkable happens), and the cell phone/internet service, there isn't anything left.

We are damn lucky to have extended family helping us.  Without them, after that last paragraph we'd have a decision to make.  Here are the options:

1.  We could drop the cell phones and internet.  Some people think it's a luxury, and in a crisis it would have to go.  But it's important for my husband's work and schooling, and for homeschooling, and it's often my only link to the outside world.  There are also two people in the family with severe asthma, and no close neighbors here.  Being without phones would be scary.

2.  We could skip a van payment.  Done that before.  Of course, there isn't going to be money next month to make two van payments.  Same goes for heat and electricity.

3.  We could cancel the health insurance, or the term life--odds are we won't use it.  Maybe we could move in with that extended family if the worst happened.  Once again, if we were starving, it would have to go.  Without health insurance we'd be back to being those free-loaders I've read about, getting our health care in the emergency room and never paying our bill.

4.  My husband could work harder.  He works full-time and he's in the National Guard, but  he could always quit school and get a night job, right?

Oh, wait, we haven't bought groceries yet....

About this time, the car insurance bill comes, or somebody gets sick, or something breaks.

We are so lucky.  It's warm here, and there's plenty of food in the kitchen, and there will even be a few presents under the tree.  And it's wonderful to have the internet to distract me when I'm too sick to do much else.

I don't want to find out what it's like to be that woman in the letter.  I wish more people really understood her situation.  I kinda wish I didn't.  I wish she lived next-door, so I could take her a little food and some Christmas candy and some really cheap presents for the kids.  Sounds like the kind of family where, if the kids could ask, they might ask for socks or toothpaste for Christmas.  Or a little food.

It's just that I so badly wanted to write that woman a check today.

* Jeff Foxworthy--one of the people who 'gets it'

Here We Go Again....

I came down with a head cold yesterday morning.  Nothing serious--sore throat, runny nose, slight temp. Felt like going back to bed, but didn't.  I started antibiotics--that's the routine these day when I get a cold.

So I woke up this morning at 6:30 and noticed I was short of breath.  Asthma.  I asked my slight-groggy-just-got-up-out-of-bed self if maybe I should start taking prednisone.  I've learned over the years that when I ask that question, I probably should.  I've also learned over the years that it's better to take a little prednisone before the asthma gets out of control than to wait and take a whole lot after it gets out of control.

So I took 40 mg. and I'm less short of breath now.  But I have two choices--I can move around the house, slowly, or I can talk.  I don't have enough breath to do both at the same time.  Hopefully the antibiotics will kick in before I get an ear infection (got one a couple of weeks ago but at least the antibiotics got rid of it quickly), or a sinus infection, or pneumonia.  Christmas is coming, and I DO NOT want to be sick.  I have somehow managed over the years never to miss Christmas.

At least all the shopping is done.  The wrapping, the cards, the decorating.  All done.  Our kitchen is stocked up.  The house is something approaching clean.  Good job me. :)

Sunday, December 18, 2011

Walking along the beach, you might see surfers....

I saw the movie ‘Soul Surfer’ today.  It’s been a popular movie, and you may have seen it—it’s about Brittany Hamilton, a young woman who loses her arm in a shark attack and goes on to compete in amateur surfing competitions.  It’s based on a real-life story.

I didn’t realize how much, and yet how little, Brittany and I have in common until the kitchen scene.  In this scene, after the shark attack, Brittany gets out an apple and tries to cut it, unsuccessfully, dropping the apple on the floor in the process.  Being in the kitchen is a disaster.  After she tries to take the twisty-tie off of a loaf of bread, she gives up, at least temporarily.

Although there is a great deal to admire about Brittany, I don’t have any desire to trade places with her (better the devil you know, I suppose).  I hope that I would be able to cope with a similar experience with as much courage as she showed, but I don’t really want to know.   However….

Some people might think it horrible of me to say that I might have been better off.  I don’t really want to be somebody else—I like being me most days.   But for many people with a hard-to-see disability, there is something to be just a bit envious of in this movie.

Wherever Brittany went, the support for her was almost universal.

This makes a great deal of sense.  Anyone can see that losing an arm would be a major adjustment.  No wonder people were impressed at her pluck in climbing back on the surfboard.  That must have been incredibly difficult.  And her family does a wonderful job of coping.  They don’t over-praise her when she finally manages to make them all breakfast one morning.  Neither do they become overly depressed at the fact that their daughter isn’t the same as she used to be.  Aside from some quite understandable moments of anger and sadness, they mostly matter-of-factly go on with life, doing what needs to be done, and being grateful to still have their daughter with them.

Well, we all have our moments of self-pity, and I had one after I stopped laughing over the kitchen scene.  Most people might not see the humor in that scene (and admittedly, I’ve sometimes been accused of having an ‘odd’ sense of humor), but I wasn’t really laughing at Brittany.  It was the recognition of what we have in common.  You see, one of the things I’ve had to work at over the years (okay, I’m still working on it) is not being a disaster in the kitchen.  It was the recognition that, even though I was born this way, Brittany and I have something in common.

I’ve had a lot of trouble trying to learn to do some of the simplest things.  It’s not easy in the kitchen when you don’t have good visual memory.  You don’t remember where anything is until you’ve gone through a lot of repetition.  You have trouble finding things.  You open the wrong cupboard.  Over and over and over again.  You don’t see things when they’re right in front of you.  You can’t figure out how to take apart the blender.  A week later when you use the blender again, you can’t remember how to take it apart from the last time.  People lose patience.  Some days it’s a race to see who will lost patience first—them or me.

I generally try to stay out of kitchens other than my own, because I just don’t want to have to try to explain once again why I’m having so much trouble.  This is what struck me about the kitchen scene in the movie.  Nobody glares at Brittany when she drops the apple.  They don’t express disbelief that she’s having so much trouble.  Throughout the movie, they let her keep trying and trying at the various challenges she encounters, without once taking something away from her because she’s not mastering it immediately, or getting angry with her for having to do things differently.

It must be nice when people can see what’s the matter with you.

In my self-pitying moment, I wanted somebody to admire the persistence it took for me to learn to drive a car.  A few months ago I drove to my kids’ friends’ house.  By myself.  I had to memorize the route there.  I also had to memorize the route back, because, you know, all the turns are reversed on the return trip, and I can’t do that in my head on the spur of the moment.  I was reasonably proud of myself.  Didn’t really expect to get the Presidential Medal of Honor, but I was happy.  If I have to go there again (I’ve gone twice now) I’ll have to have yet another look at the map, but I’m used to that.

Where is the admiration?  I worked really hard at driving—something that seemed quite impossible a quarter-century ago.  Instead, when I get lost, or don’t know where something is, I get disbelief.  I’m urged to try harder, to concentrate.

It’s the same with a chronic illness.  For instance, I keep the house stocked up with groceries as if there were going to be a blizzard year-round, so that when the next unpredictable bout of illness strikes, I won’t have to ask somebody for help in getting supplies.  And going to the grocery store is quite an accomplishment.  First I have to find it.  Then I have to find all the groceries.  Where is the praise for how independent I am?

 How about that?

And where is the praise when I get dressed and get the kids ready and go out and put on a happy face, when I’m really feeling awful?  Or when I’m having a truly horrible day (the kind where the self-pity might actually be warranted) and at eleven o’clock I’m getting dressed—just dressed—and it’s an amazing accomplishment.  Wow, look at me, I dressed myself.  It was really a challenge, but I did it.  Maybe later, after I’ve recuperated….I’ll brush my hair!

And don’t get me started on wondering why Brittany didn’t have to attend public school, and why all the other teens in the movie didn’t tell her every day how ugly she was.  That’s a whole other blog for another day.

All right, rant over, deep breaths….

I am so fortunate to have some people close by who encourage me, who treat me like I’m just another fellow human being.  Some people don’t have that.  These 'encouragers' aren't common enough, and I want to be more like them.  I'm also lucky that many days I can not only dress myself, but I can do just about everything for myself, and quite a few things for other people, too.  It's a good day when you can brush your hair, and make yourself a sandwich, and walk to the mailbox.  Many people out there don’t have that, either.  Life is pretty good here on the island.

One last thing….

Good job, me!

Friday, December 16, 2011

Hidden in Plain Sight

Is the rate of autism really increasing, or were we just missing it before?  Asperger's Syndrome, also known as high-functioning autism, didn't exist as a diagnosis until 1944, and it was another half-century before it was beginning to become more widely-known.  Now it is often included in the diagnosis of autism.  This article cites testing in an American mental hospital that revealed undiagnosed autism in 10% of patients, and a British study of adults of all ages that found undiagnosed autism in 1%--about the same percentage found among children today.,0,6403471.htmlstory

Monday, December 12, 2011

Click to Donate for Free

Hi!  I just put up a list (to the right) of web sites you can visit to donate to a variety of charities for free.  These sites work by getting corporations to match your clicks with donations.  I've checked these out and they're legitimate.  Some of them have been a part of my daily routine for many years now.

The last two on the list are sites that test your knowledge of various subjects and reward charities for your correct answers.

It's not always easy finding volunteer work you can do on an island. :)

(And if you happen to know of any others, I'd be happy to check 'em out and put 'em on my list!)

News article--prosopagnosia (face blindness)

I especially liked the comparison between recognizing faces and memorizing leaves on a tree.

Saturday, December 10, 2011

No pushing, no shoving!

I just put out a jar of assorted candy (scroll down).  No fighting, there's plenty for everybody.

This is what you get from years of seemingly aimless internet surfing.  You never know what's going to wash up on the beach. :)

I want my money back!

"Gifts allow us to demonstrate exactly how little we know about a person. And nothing p***es a person off more than being shoved into the wrong pigeonhole." - From the HOUSE Season 4 episode “It’s a Wonderful Life”

Just as I was posting about my various neurological ‘differences’ yesterday, this article popped up in the news:

It’s about a 25-year-old man who just this year found out he has autism, after years of misdiagnoses, mistreatment with prescription medications, and finally heavy use of street drugs in an effort to just kill the pain.  You’d have thought with all the autism in the news right now, people wouldn’t still be falling through the cracks.  Don’t worry, though, I’m a sucker for a happy ending, and this story has one.

Friday, December 9, 2011

My Very First Post........

Hi!  Welcome to my island!  This is my very first post on my very first blog, so I’ll introduce myself, even though the three people reading this probably already know who I am.

My name is Deb.  I’m married and I have four homeschooled daughters--ages 15, 12, and 10-year-old twins.  I’m a stay-at-home mom, but I didn’t become one on purpose (at least, not the 'stay-at-home' part).  I have a genetic immune deficiency called hypogammaglobulinemia (also known as CVID).  It’s related to the ‘boy in the bubble’ disease.  Although I was born with it, I wasn’t diagnosed until ten years ago.  I’m especially susceptible to bacterial infections—sinus infections, ear infections, and pneumonia, as well as things like ‘mono’ and strep throat.

I also have several neurological ‘challenges’—it’s kind of like I had a stroke, but I was born this way (hey, that would be good on a t-shirt), and some of it runs in my family.  The biggest complaint I have about my brain is that I don’t remember much of what I see.  I don’t recognize people by their faces.  When my children were younger I used to dress them all alike when we went out in public so I could find them.  I also don’t recognize cars & buildings, so I can only drive to a couple of dozen places.  I get lost very easily, and once I get off-track it can easily take an hour (and perhaps a bit of profanity) to find anything I recognize.  I get lost inside buildings, too.  I also have trouble hearing if there’s a lot of background noise.

All of this is statistically related to Asperger’s Syndrome (also called high-functioning autism).  I’ve been diagnosed with prosopagnosia (my difficulty recognizing people) and CAPD (my trouble with background noise).  I haven’t been tested for Asperger’s, but I’d probably be diagnosed with it.  It’s only been during the last ten years that I’ve learned about Asperger’s and most of the rest of this.

What all this means is that I don’t recognize you, can’t find you, might not be able to hear what you’re saying, and just generally don’t have a clue sometimes.  And, please, don’t cough on me….

Anyway, that’s how I got exiled to my happy homemaking island, but I won’t be writing a homemaking blog any time soon—the most I could manage would be a ‘barely keeping on top of most of it most of the time’ blog.  While I’m waiting for the spaceship to come and take me back to my own kind, I keep busy barely keeping house, homeschooling, playing the piano (especially Chopin, with whom I’ve become slightly obsessed….all right, more than slightly….all right, all right, not quite obsessed to the point of madness), and trying not to spend too much time online.  I also like to walk outside along the beach under the trees….