Wednesday, January 30, 2013

Exploding Sparrows

Well, my mother is still on the ventilator.  They're talking about the possibility of long-term care, now, if she improves.

I am still short of breath and coughing a bit, but I'm still doing housework and playing the piano.  I'm doing pretty well, considering the wild weather swing we are in the midst of here.  The high temperature today was in the upper fifties, and tomorrow it will be in the lower twenties.  The barometric pressure is incredibly low.  I almost expect to see my sparrows start to swell up one by one and explode from the lack of air pressure out there.  It may well be that the reasons I'm feeling so good are my awareness of the weather forecast's affect on my asthma and my willingness to hit it hard with the meds first thing this morning at the littlest sign of discomfort.  As a result, I'm doing far better than I usually would with weather like this.  OK, it helps to actually have some meds--last year all I had was prednisone.  The meds hardly cure me, but they're helping to make the asthma more manageable more often.

Thursday night I walked with my family from the car (only four or five cars from the front) into the grocery store, and I had a nice little asthma attack.  I could barely walk.  But in general I'm doing pretty well.  Once in a while I'm still a little more tired than I'm accustomed to.

It's occurred to me that if it had been my father who got sick, we'd have been in real trouble.

Mom doesn't drive.  It may be because I take after her.  And she's not very outgoing (major understatement--she'd be happy living on a mountaintop with a couple of dogs for companionship and protection--seriously, she's always said she wanted to be a hermit before she met my father).  And I was *really* sick the first week she was in the hospital.  If that had been Dad, somebody else would have had to drive her to the hospital.  And then wheel her around in her wheelchair.  Heck, she needs help with her clothing in the bathroom (hope that wasn't too personal).

And then after I got the least little bit well (at which point I would have theoretically pushed myself to the point of getting even sicker), I wouldn't have known how to get to the new hospital.  And, then there's the fact that my mother no longer does much housework, being confined to a wheelchair, with hands that don't work very well any more.

And then there was the tonsillectomy.  My daughter is doing very well.  I amuse myself these days by telling her to speak up.  But she is now past the two-week point, so she's allowed to do housework and go out in public and roughhouse if she wants.

We've all had colds here--except for me!  Maybe I had that cold once--there are a couple of hundred cold viruses, and you can develop immunity to specific ones.  And it's a good thing I never caught it (knocking on wood here--can't hurt), because if I catch a cold right now while I've still got another two to four weeks before I completely recuperate from the asthma, I will be screwed.  This is how it works--one illness, and a month of asthma afterwards.  A second illness, and I'm in big trouble.  A third, or fourth, and I'm debilitated until at least Memorial Day.  All I can do is hope I get well before something else hits.

Although, for Social Security purposes, it would be great if I got sick again....

Monday I had my lawyer's appointment.  She had a few questions, and some pointers for appearing in front of the judge on March 5.  And a few days ago I found out that my husband's guard duty had been moved to the same week as the hearing.  ('S***.  S***!  Who will drive me to the hearing?!  Ack!!!')  So at the lawyer's office I discovered that the hearing could be moved.  And that my husband could be a witness, which would be good--he always comes across as credible, while I tend not to (hard as I try to ape more neurologically typical behavior), so this can only work in my favor.  So we started a continuance--a delay of probably a month or two, so that he could be there.

A delay would also work in my favor, the lawyer explained to me, because maybe....and then she started stuttering, so I finished it for her:  (joyful voice here) "Maybe I would get sick again!"

And then the Guard moved his guard duty week again.

So now we have to write a letter for the judge who'd already requested evidence that my husband's guard duty was conflicting with the hearing--a letter stating that my husband had originally had guard duty the week of the hearing, but they'd moved it, stating who he talked to, what they told him, and when.  So now we're stuck with the original date.

If it's not one branch of the government, it's another.

Next week we go to the Cleveland Clinic.  Stay tuned....

Thursday, January 24, 2013

As Happy As I Make Up My Mind to Be

Well, it's been a week since I last blogged.  My mother is in really bad shape.  She went into ICU, and is now on a ventilator.  I haven't felt much like blogging.

I'm still short of breath and coughing.  I've been to the doctor today, and I've been given another nasal cortisone spray (because I asked for it), singulair tablets, and another inhaler.  But my meds were $50 at the pharmacy--even thought they're prophylactic, I probably won't get them refilled.  Maybe I'll have enough to at least make it until spring.

Just walking a few yards from the car to the doctor's office in the cold meant twenty minutes of coughing and breathing hard.

I was glad my husband didn't work today (all right, it's been bitterly cold and he hasn't worked all week).  Having him at the doctor's office meant a second person to convince the nurses and doctor that I'm not a hypochondriac.  And it meant I was assured of not getting lost today.

I've felt a little depressed today--no wonder.  And I've had to ask my father twice now for money to pay bills, or we'd have no phone and soon no van.  And two of my kids have had colds now--if I get this, I'm going to go downhill in a hurry.  At least we've been to the food bank and grocery store.  But I do definitely not want to be housebound with my mother in ICU.  It was bad enough the first week and a half she was in the hospital--I couldn't visit at all.  And I had to rely on my husband to drive me there.  And I had to explain to my father, who asked what I would do in an emergency, that I was going to need help getting there.

And I'm still sick.  Every winter is like this--I get sick, and then I try to catch up on the housework and get supplies, and then I get sick again, and then I try to catch up and get supplies again....

I'm just happy in January if I can play the piano and do housework, even if I can't feed the birds myself or walk to the mailbox.  I can hear myself breathing heavy as I sit here on the computer.

I just spoke to my father, who hadn't eaten dinner tonight--I've been pressurizing him to get a piece of pie or something, and it looks like he's finally going to.  I told him not to make me come up there.  Probably the first time in my life I have parented my father.  And I actually think I could go up there--I've been up there three times now, and I've paid very close attention, and my husband has helped me figure it all out, and he's drawn me a map.  I may very well even be able to find my way home again.  I had to memorize that, too.  My husband has done a good job of learning to help me learn routes, especially considering that his brain works exactly opposite from the way mine does--he does north/south/east/west, I do left/right (badly).  He just knows the lay of the land, I read signs and try to pick out a lone landmark (oh, wait, I know that row of white poles--isn't that the way I go home from the doctor's office?).  And I think my father is coming around, now that my mother's in no condition to be a go-between, and he's had to try to teach me how to get around the hospital.  So far I've gotten 'walk in the front door, lobby with waterfall is on the left, behind that is the cafeteria'.  Nothing wrong with my memory--I remember the floor and room number effortlessly.  I generally rely on passers by in hospitals to find my way--as long as I can encounter enough people with pointer fingers, I'll be all right.  Even if I don't know if it's the same person I asked before....

Meanwhile, I have an upcoming appointment at the Cleveland Clinic in a couple of weeks!  And my Social Security appeal hearing is a month after that.

Our homeschooling schedule has taken a serious hit lately.  After missing a week (which was planned) for my sister's visit, we missed another week for the flu.  Then all these appointments and visits with Mom & Dad.  These things are part of life, though--hopefully my children are learning to cope with adversity.  And the appointments--it may be that at some point my getting Social Security (and then food stamps and such) could allow us to keep our home, which would certainly benefit the children.

My eldest daughter is doing well--she's off most of the pain meds now, and she's even eaten pretzels.  She sounds just like one of the aliens from the movie "Galaxy Quest". lol

One more thing....the food bank.  It's so incredibly helpful right now.  We left with a huge cartful of groceries.  If I ever have money, that's the first cause I'll donate to--we owe them.  But what a grim place.  The people who work there are grim.  The people who are getting help are grim.  They seriously need a morale officer.  I can see how it happens--you're poor, and who knows what else is happening in your life that's contributed to that, and it's depressing.  But at some point along the way I made a decision to not. be. depressed.  Not that I never get depressed.  But I am going to enjoy life when I can.  Although that's been more difficult lately.

I miss talking to my mother.  I miss the lone friend who recently dumped me.  I miss having a church full of people.  I can't help but notice that my husband has dozens of people who are concerned for his well-being because his mother-in-law is in the hospital.  I have almost nobody.  My father and my sister and my husband.  One cousin I hardly ever talk to called last week, and I almost cried because somebody asked how I was doing....

Thursday, January 17, 2013

A little of this, a little of that

My mother is doing just the slightest bit better.  They think now that it's possible her trouble started, not because of the flu, but because of the fall she had when she got the flu--she basically just fell out of her chair because she was so sick she couldn't sit up.  The doctors have also said that the reason she's having trouble communicating is that she's delirious because of the flu.  Something I can understand, having lost little pieces of my own life the first week I had it.

I'm doing pretty well--all right, I'm not doing that well (I'd thought I'd try a smidge of denial), but I'm doing pretty well for me in January.  I suppose my definition of 'pretty well' is different that some people's.  I just went outside to take out each dog for the last time tonight, and fill the bird feeders, and stick a bag of trash in the dumpster by the door.  All in the cold air.  And now I'm having a fifteen-minute asthma attack as penance.  But at least I've been able to play a fair amount of piano and keep up with the housework.  It's better than being stuck in The Chair.  Last winter I spent way too much time in The Chair.

I had the twins bring in firewood this morning.  Just being in the house while the door was opening, allowing a bit of cold air to waft in from time to time, was enough to start me coughing.  Cold air is definitely my nemesis.  One of the villains of my story.

We had a tiny bit of good news here.  I'm not allowed to say where it's coming from, but we're going to get some help with groceries for the next three months.  And my sister is sending her monthly cash, so we'll be able to put gas in the vehicles and buy a few staples that we don't get with the help we're getting.  And hopefully we can pay the mortgage with the next paycheck.  My husband only gets paid every other week.

That W-2 can't come soon enough.

Maybe next week I'll be able to actually go out and get the groceries.  And go to the doctor.  An ambitious schedule of outings for me in my current condition.  And next week the temperature is supposed to go down to single digits.

I think an average person would go nuts here.  I haven't been out of the house in two weeks.  But I'm quite used to this.  In fact, going out and trying desperately not to let on how sick I am, and trying not to get any sicker, isn't really all that much fun.  The important thing is to keep busy.  There's another one of my arch-nemeses--Boredom.  I've been busy working on my latest nocturne, though, and trying to work on my memorizing skills, and reading my book on Tao, and cleaning the house, and homeschooling.  I can usually find plenty of things to do, especially if I can spend half the day out of The Chair.

It's been two weeks since the start of the influenza adventure, and at nine-thirty at night I am tired.  'Night.

Wednesday, January 16, 2013

Would you like some ice cream before dinner, dear?

Well, my daughter's home from her surgery, and all went well.  It is truly amazing what doctors can do now--a laser instead of a knife, an outpatient procedure instead of a week in the hospital.  She's still speaking a little, and not in too much discomfort for what she's just been through.

My mother is still in the hospital.  She has some kind of an intestinal blockage, and they've been pumping out her stomach, and are talking about one day's worth of dialysis to rid her body of some of the toxins.  Her kidneys are functioning better now.  She's spoken some 3-4 word sentences.  A couple of weeks ago she and I could talk each others' ears off--her mind functions just fine.

It's been hard for me, not being able to go in to visit her, especially when she ended up in the ICU.  There was just no way for me to drive up there.

It's a completely unfamiliar part of town, six or eight unfamiliar roads, and a sprawling hospital campus.  And I wouldn't be able to walk more than perhaps a half mile in this cold, after which I would probably be unable to walk through a building.  I'm glad my kids are old enough to help with the chores--hauling firewood, taking the dumpsters to the road and back, getting the mail, and even feeding and watering the birds when I can't.

And now I'm stuck at home for the rest of the week.  I'm not physically up to going anywhere anyway.  And I had a little bit of a setback this morning, which I am now recovering from.  Nothing too scary, just the normal ups and downs I always have when I'm sick.  I've been tapering off the prednisone, which may very well result in me eventually getting sick all over again.  Doctors just can't understand why I can't simply take my prednisone and recover on schedule.  A tapering-off week and a half of prednisone ought to fix me right up.  And my inhaler is mostly empty now.

Perhaps next week I'll take one trip out and go to the doctor.  And I may try my hand at having groceries delivered, because I'm definitely not up to that.

I like to think I can tough it out and go back to normal, but I can't.  I have been lucky enough to be able to play a lot of piano--yesterday I was really able to play, as opposed to the one-piece-at-a-time-followed-by-total-exhaustion of the day before.  I've looked at the nocturne I finished before Christmas and decided to revamp parts of it and flesh it out some more.  I'm pretty happy with this piece.  And I've been able to at least be useful as a homemaker again.  I've done a fair amount of light cleaning.  And we've finally resumed homeschooling today.  Reading spelling words for a spelling test out loud was difficult.  That's where my breathing is at today.

It's been difficult for me to accept that I'm just not going to be able to be there for my parents.  And even if my health were perfect, and my daughter was well enough to be left home alone, I still couldn't go--not without a chauffeur.  I've mostly succeeded in not worrying about what other people must think about me--that my mother is in the hospital and I haven't even visited.  Most of the people that would think that way aren't part of my life, anyway, if only because my lopsided brain and this disease have robbed me of those relationships.  One cousin did call yesterday.  After I got off the phone, I wondered if she believed I was really sick.  It's hard not to wonder when it's happened so many times with so many people.

I've been reading a fascinating book about Taoism.  It's made me think--among other things, about the difference between wanting what I want for it's own sake, or wanting what I think other people want me to want.  These days I have to mostly focus on what I want, because I can't have those other things anyway.  I want to visit my mother, but I don't have to care if other people want me to visit her.  Of course, sometimes I still do.

My religion these days has turned inward.  I think more about my relationship to the universe, and less about finding a community of like-minded people.  My life has turned inward.  I compose music to please my own tastes, read what I choose to read instead of what other people would approve of.  In some ways I'm lucky--it's not something that a lot of people have the leisure to do, composing songs and reading books and contemplating the universe.

Monday, January 14, 2013

I Have a Dream

Not a good day.  I had a minor setback last night because of a passing weather front, and then I woke up this morning to a seriously cranky spouse.  Still don't know why.  Just glad he went to work today.

A little more often, like maybe even once a week, what I'd like is to wake up in the morning and not have my life be all about me trying not to be the way that I am. (And before we blame it all on cranky spouse, it's definitely not just him.)  I've (mostly) accepted the days on end of being sick, but I'd like having that not be the focus of everybody's attention.  I've (mostly) accepted being unable to drive places or hear things or recognize people, but I'd like that be okay, too.  I have a vision of me just going through my day and everybody just accepting that this is the way it is.  As in, 'hey, there's 'erika', she's sick and she can't work and she's poor and her brain is all lopsided, but she gets up in the morning and she tries to take care of her kids and pets and house, and she's a basically decent sort, so let's welcome her to our species'.  Strewing flower petals on the streets where I'm about to walk would be optional in this fantasy.  Gifts would be fine, too.  Fan mail, anyone?

My mother has been moved by ambulance to another hospital this morning.  They don't really know what's wrong.  My sister has cancelled her trip this week--she's still pretty sick.  I'm used to this--when I get sick my expectations as to how quickly I'll get well are pretty low.  Hey, I'm up, dressed and everything today, did the chores, and it's not even lunch time.  I am thrilled.  Even played a little piano yesterday.  It would be nice if other people always understood why I can't just jump full-time (even while almost everybody around me is still at least somewhat sick) back into my normal routine.  But who ever said life was perfect?

I'm worried about Mom.  I want to visit.

And I'm just getting over the flu.  There's something every living being should know about getting over the flu--you are at serious risk of depression.  It doesn't matter if everything was going fine before it hit, and it doesn't matter if it's going fine when you're over it--you are still at risk.  Although maybe it would help if everything was going fine.

Guess I'll go clean some more house and play some more piano.

Sunday, January 13, 2013

Poor White Trash

Feeling quite a bit better today.  I'm still coughing and wheezing a bit, and my sinuses are still acting up, but I'm still improving.  My mother is still in the hospital.  She's only speaking one or two words at a time.  My father is taking care of her.  My sister (who lives several states away) is, I think, exhausted. 

I can't even visit my mother.  I would really like to go and visit her.

It's hardly the first time this has happened--that somebody in my life became seriously ill and I couldn't visit.  When my mother-in-law lay in the hospital dying several years ago, I couldn't visit.  My mother's brother had passed away, she was across the country, and I didn't have a babysitter.  And my mother has been hospitalized before, when I've been unable to visit.

Maybe it's partly because I've been so sick so many times, in isolation, that I wish I could reach out to the people in my life who are sick right now.  And watching everybody struggle through this illness has really brought home to me how isolated we are here.

Every month we count on my sister sending cash.  If she were too ill to do that, it would really hurt.  Especially if it happened while my parents were also unable to help.  We depend on that grocery money every other week.  And their help with bills.  It would quickly become a catastrophe if neither of them could help us.

My husband is trying to carry the financial load all by himself, with one part-time job, but he can't do it.  We have a few dozen dollars in the checking account, and nothing else coming until this Friday.  The grocery money will be due about that same time.  We spend the last grocery money keeping the lights on.  We get no help from the government, or from any charity.

And it's not just a financial problem.  My husband has been carrying other loads, too--having to go to work no matter how sick he feels, afraid to miss a single day.  Having to go to drill weekend no matter what.  Running every errand in the house at the moment.  Get every prescription from the pharmacy.  Taking the girls to all their church activities. 

He carries the total responsibility for our girls' social life, such as it is.  I can't network with other women.  I can't even go up to people in a group and ask how they're doing--I don't even know which person is which.  In a noisy group I have a huge amount of trouble carrying on a conversation.  It's basically impossible to hear.  It's become undeniably apparent over the years that this isn't something I'm going to be successful at.  I tried to pretend that I would catch on eventually.  But I have been a total failure at networking, and my children have paid a price for that.

And my husband--he'll have to take my daughter to her surgery.  I'll probably try to go, too, but even if I were completely well, I couldn't go by myself if I had to--I can't even find the hospital.  I hope I can even walk as far as I need to once we get there.  We'll certainly all need to walk slowly so I can keep up.

I should be going grocery shopping before the surgery, but I've learned (over and over again) that I can't be doing that to myself.  I'd make myself sicker all over again.  My best bet is to try to recover from this round instead of making myself sicker and then taking a hard fall the next time somebody exposes me to a tiny virus, or having a relapse after walking through a parking lot in the cold.  And it's not as if there is actually enough money for groceries anyway.

We're on our own here.  All I can do is depend on the groceries that have already been stockpiled (kudos to me), and hope no more bills get seriously out of control.  I would certainly hate to have to call my father while he's with my mother in the hospital, to ask him to give us more money, or to call my sister to ask her to pay a bill.  It may come to that.  I'm lucky to have them.  At least we can keep a roof over our heads--no small matter.  It's more than some people have.

And there's no one else to help.  No one to drive me to a routine doctor's visit tomorrow.  No one to keep an eye on the girls if I did go.  No one else to drive me to the hospital for my daughter's surgery if my husband were unavailable.  No one else to help take care of my daughter after her surgery if my health were to take a turn for the worse.

I've done my best to raise my girls to be self-sufficient.  I've tried to drill it into them that if I'm sick, they have simply got to step in there.  I've spoken to them lately about the need to just make the best out of the way things are.  They're all old enough now to realize that we're poor, and that I am alone, and that some kids have more friends than they do, and get to have decent clothes and go on vacations.  Welcome to the real world--there are lots of kids making do with a lot less.  At least they're not being raised by drug addicts, or being beaten, or missing meals.  At least there are books in the house, and internet access.  At least the neighborhood's safe.

Maybe it's one of the important lessons in life--that you make the best of whatever situation you find yourself in.  Maybe a cushier life wouldn't even be the best for my kids.

I wonder if it's just self-pity.  It's been a dark, dreary day outside today.  On top of that, after having been so sick for so long, perhaps I could be forgiven a smidge of self-pity.  It could be chalked up to fatigue, and a not-quite-yet-up-to-par level of oxygen in my blood.  But there's nobody to ask how we're doing here, except for the other sick members of my own family.  Nobody to keep an eye on how we're doing.

And it goes past that.  I'm homeschooling in isolation here.  I deal with my illness in isolation.  I go outside and pray--in isolation.  My husband goes to work, and church, but he deals with a lot of the fallout from being married to me in isolation, too.  Not much support out there for him, either--mostly just people not understanding why I don't work outside the home.  It's our own fault we're struggling financially--it was our decision that I be a homemaker that did this to us.  I'm not really that sick.  I'm not really struggling to drive, or recognize people, or hear what's going on around me.

I've spent too much time lately trying to convince government agencies and doctors that I'm not faking it.  It'll be worth it if I ever actually qualify for Social Security or food stamps.  But it's stressful.  My biggest battle is mental--not letting it get to me when I get sick, or the bills pile up, or I can't do things for myself, or people's negative attitudes toward me trying to redefine me into a piece of lazy white trash when that's just not where I want to go.

My children deal with this isolation, too--the lack of family except for those same immediate family members who have stuck by me, a lack of parents' friends, or even neighbors.  It's a good thing there's a church.

There are a lot of other families out there, almost an uncountable numbers of families, dealing with their problems in isolation, some living in poverty--far worse than ours.  I wasn't aware of them, growing up.  I wasn't raised around poverty, or drug abuse, or crime.  I didn't see people being told they're worthless, year after year, fighting not to believe it, fighting not to let their children believe it.  And I fortunately wasn't raised around people who were already convinced of their own worthlessness.  That worthlessness may be our worst enemy.

I hope someday we can all do better than this.


Saturday, January 12, 2013

How can we talk about 'Hell' if we can't say 'Hell'?

Good afternoon.  Well, reasonably.  I am slowly getting my will to live back.  Yesterday I noticed my gait getting back to normal--I've been kind of shuffling and leaning to the right a lot.  You'd think I'd had a stroke.

Today the weather is beautiful outside, and I've done a couple of very minor outdoor chores while I have the chance.  Tonight it's supposed to rain (in fact, we're under a flood warning, but not to worry, our little island is on high ground), and then sleet, and then snow.  I've walked outside, leisurely, a couple of times--that's the perfect amount of exercise for me today.  Don't want to end up face-down in the mud from over-doing it.

I got the chance, after waiting until two of my kids came home at 10:30 last night (in fact, my dad picked them up and brought them home so my husband could get a little sleep, which was really nice of him), and waking up when my husband left in the wee hours of the morning, to sleep, and sleep I did, until nine, without waking up.  That helps a lot.  Nothing like sleeping without waking up every couple of hours to take more pills and puffs of inhalers.

My mother is still in the hospital, at least until tomorrow.  My sister had a really bad day yesterday.  I'm a day or two ahead of my sister, and I guess it was good that I went in last Saturday and got started on all the meds when I did (Meds is too a word, spell check--who wants to write 'medications' a thousand times when they're sick anyway.  Spell check is not the boss of me.).  My kids all got better a little faster than I did--but then, they've all got a few years on me.

We usually take it easy on the once-a-month weekend my husband has guard duty--no school, not too much work.  But I'm not really in the mood to sit around all weekend after having done it for over a week already.  We did watch 'Dracula 2000' on TV today.  Not something I'd let younger kids watch.  It was pretty good--kinda 'kitchy'.  Is that a word?  Spell check might have me here.  Anyway, Gerard Butler was convincing as a vampire--no wonder he was hired to play the Phantom a few years later.

I started a book last night--'Love Wins' by Rob Bell.  Pretty good stuff.  My sister got it for me.  Even though a church would probably collapse if I walked into it right now, as part of my new practice of 'Eclecticism' I'll read anything.  It's a good book, and I ought to read it, because it's one of two books I bought my sister from a list of potential Christmas presents, and then she bought one for me and my husband each, so it might be fate.  I'm not so sure I entirely believe in coincidence these days.  And today's movie kind of tied into the book's theme, too--whether or not God condemns people to everlasting damnation.

Condemning people to everlasting damnation just doesn't sound very nice.  Sounds more like something the devil (if there is one) would enjoy.  I mean, I've met people I just don't like very much and don't really have any use for, and I'd still feel sorry for them if I had them off somewhere being tormented for eternity.  I'd probably rather just stick them on an island far away and leave them.  Or just put them to sleep or something.  Can souls be put to sleep?

I can certainly see the wisdom of having to separate some souls from others, if they're really demented or something--to protect the 'innocent' from those who would harm them.  Maybe being evil and demented is its own kind of punishment.  Maybe being ostracized from the rest of the 'soul' community would be enough torment.  Do souls need other souls to be happy?

That's enough cold & flu medication for me now.  I'm going to go see if I still remember how to play the piano.  Something not-too-strenuous.

Friday, January 11, 2013


Day eight.  I'd be worried if everybody else wasn't feeling the same way I am.  As it is, I've called the doctor's office and been given permission to keep taking my sinus meds even though I was supposed to stop after a week.  Can't do it yet--I stopped last night, and that was bad.  Can't drive myself to the doctor.  Can't find any other healthy people to take me.  Kids aren't well enough to leave the house yet.  The doctor isn't in today, so no prescription of stronger antibiotics until at least Monday.  I wouldn't even ask, but since I have this long, drawn-out history of suddenly raging-out-of-control-sinus-infections that lead to suddenly-raging-out-of-control asthma attacks, I thought it was prudent.  I've tried ignoring it, that certainly doesn't work.  I'll just keep taking my vitamins and drinking plenty of fluids.

Today I've set the ambitious goal of fifteen minutes up, and fifteen minutes down.  I am still woozy.  Last night, just once, I almost fell over while I was doing housework.

My sister was feeling worse last night--I'm still waiting to hear from her today.  All I can do is keep an eye on everybody from a distance.  My mother is doing a bit better and may be released from the hospital today.

But my husband has a light case of this.  So does my father.  Apparently even people who got vaccinated are feeling some of this.  My poor husband has to take our daughter for her blood test today, pick up a few groceries (ice cream and such) for her (fortunately for the birds he picked up their food yesterday), take the girls to a party at church (and they had another church function last night) which lasts 'til ten, only to have to get up at 2:15 a.m. tomorrow morning to drive to Indy for drill this weekend.  Fortunately somebody else will be doing most of the driving.  I'm  just glad he didn't have to work today--it's cold and windy out.  Actually, it's supposed to warm up quite a bit today.  I hope that approaching weather front doesn't do it's (customary) number on my lungs.  I'm still coughing and wheezing here.

House is a little more under control here.  After all, we wouldn't want a paramedic to see the mess. ;)  I'm going to make sure all the animals' water is clean and their food dishes are full today.  Yesterday I brought more wood in from the deck--I'm glad we had extra wood stacked there, because the rest of it is off across the yard and I don't want any of us walking that far outside.

All in all it's been quite a little adventure here.  Adventures are fascinating in novels, not so much in real life, though. 

May all our adventures be little ones.  I'm going to take my woozy self and do another fifteen minutes now.

Thursday, January 10, 2013

Anybody Here Compose a Waltz Lately?

OK, putting the pieces of my life back together, here.

I was really worried last night after I opened our bills.  I'd been happy just to discover that between my husband and I we'd put all the mail from the last week in a pile on the piano, so I knew where it all was.  But our electric bill was overdue.

We'd applied to this National Guard charity program, and they'd wanted the exact amount on all our bills, and that's the amount they would pay, directly to the payees.  Only they never did.  And now my mom is in the hospital (yes, she is now an inpatient, and seemed to be doing just a tiny bit better last night).  My dad is with her, and my sister is one day behind me in the train wreck that is this flu.  So all the people I would normally ask for help were suddenly unavailable.

We also needed ice cream and other foods for my daughter upcoming tonsillectomy Tuesday, and gas for my husband's vehicle, and bird food (although that last would have to go--they're wild birds, and I'd hate to stop feeding them in the middle of winter, but them's the breaks).  So I went into my purse this morning for any money whatsoever for gas and such....

....and there was the cash my parents always give us for groceries every other week.

I know my father would not have slipped that into my purse Friday without telling me.  He must have told me.  But I have no memory of it.  And I was out and about Friday.  Hell, I even drove Friday.  I'm just remembering that now.  Horrors.  I do remember having four Mountain Dews to keep functioning at the restaurant that night.

Hang on....

I'm reading my blog from this last week.

I drove home in some terrible weather, in the dark, Friday night, too.  Wow.  Saturday emergency room trip and matching bracelets.  Sunday religious musings & pictures of owls & last kid getting sick.  Monday ranting about not being taken seriously by doctors when I'm sick.  Tuesday Mom & sister getting sick.  Yesterday....

Well, I practically had a nervous breakdown trying to get the kids to each do one or two chores and explain to my spouse that he's lucky to have clean clothes in a chair, screw the dirty dishes.  I'm not okay this morning.  I'm still having trouble breathing and coughing, even just sitting here.  Saturday the doctor said my lungs sounded clear, but I can hear my wheezing this morning on and off now that I've improved a bit.  I did get all that information for the Cleveland Clinic, and went through our bills, and updated our wall calendar.  So it was a reasonably productive day, all things considered.

My sister is one day behind me--she developed a slightly renewed interest in food and the bare basics of personal hygiene yesterday.

I'm not going to be able to go shopping this week.  I go every other week, and I'm due.  And now we're spending the money on other things, and my daughter will have her surgery, and it'll be the week after next before I can go shopping again (if I don't go and get sick again--what are the odds on that?).  It's a darn good thing I keep stocked up.  I've felt sorry for my husband having to run all the errands involved in preparing for my daughter's surgery, but then I've realized that I had the shopping and housework all caught up.  I try to always be prepared for the next illness.  He could be out shopping for sanitary napkins for five women right now, or something.  Our lights could have been shut off.

I'm so used to trying to compensate for not being able to pull my own weight in the world that it sometimes doesn't occur to me that what I do--bringing in wood, taking care of pets, doing housework, paperwork, and just generally keeping everything organized and running--is worth something.  I find myself defending the necessity of resting for a few days, even while everybody else who has this is resting.

And I've started cleaning up some of the debris around here.  I found a small treasure (treasure to me, anyway).  A page and a half of the right hand part of a new waltz.  I stood there and looked at it.  I must have written it, I said to myself.  Nobody else here would have.  I didn't recognize it until I started humming it to myself.  Definitely my work.

Wednesday, January 9, 2013

Influenza Day Six

Well, Mom's on the way to the hospital by ambulance.  They think she might have pneumonia, which is scary when you're in your late sixties.  Mom also has several other health problems, some of which may or may not be associated genetically with some of mine.  My father's the only one available to take care of her--there's no way I can help right now.

I've been up for 10-15 minutes three times today so far.  I'm still really short of breath, but it's (very) slowly improving.  I've been surprised this morning how dizzy I am, though.  I'm a morning person, so I generally expect to feel good first thing.  Silly me--flu, double sinus and ear infection, severe asthma, and I think after five days I'll just shake it off.  At least the sinuses seem to be clearing up pretty well.  All those pills and sprays I got Saturday seem to be doing some good.  It would be newsworthy if I ever recovered from a sinus infection without medical intervention.  And at least I'm not getting up in the middle of the night to use my inhaler now, even if I do run for it first thing in the morning.  I'm still a bit breathless on and off just sitting here on the sofa.

My husband put on some spray deodorant this morning and precipitated a several-minutes-long asthma attack.  While usually nothing touches my lungs except tobacco, right now any old thing can set me off.

Yesterday I called a doctor to put off an upcoming appointment, and I transcribed an unidentified piece of piano music from youtube.  I'm still looking for the composer.  Today I called another doctor about my daughter's upcoming tonsillectomy.  We may still be able to go with that next week as planned.  We've got to get her a blood test beforehand somewhere, with my husband working and my father taking care of my mother.  And I'm in contact with the Cleveland Clinic these last couple of days, trying to set up some testing for me before my upcoming Social Security appeal in March.  They want a lot of insurance information, so now I'm in contact with Tricare, too.  And today I think I'll try to sit down and open the last several days' mail and maybe transfer info from our old wall calendar to the new one and hang it up.  Easy stuff.

Maybe tomorrow I'll try to call my old doctors asking (once again) for medical records.  My sister has offered to pay, because they all need money.  Some of them won't give me anything anyway, but apparently I have a legal right to have them if I ask in writing, so that will be my next step.

Being sick is a lot of work sometimes.  Lots of doctors' visits and paperwork.  Expensive, too.

I can't call anybody on the phone because the phone isn't reliable, and now our internet is going in and out constantly, so I'd better go while I can still post this.


Tuesday, January 8, 2013

Is It Spring Yet?

Feeling a bit better today.  My temp's down to 99.1, and I can breath pretty well, as long as I don't try to actually do anything.  Every once in a while I get up and do a couple of things, and sit back down.  I got to brush my teeth today.  I'm glad I can get up.  Now I just have to remember not to do very much.  Hyperactivity is not my friend right these next few days.  I should know this after all these years, but I always seem to forget.

The kids are all doing a bit better, too.

But my mom isn't doing well.  She's just gone to the ER with another stroke.  I wonder if the flu did it.  I wonder if the flu drove her blood pressure up.  Mine was up some fifty points in the ER--more than I usually get from the stress of having to deal with doctors.

I'm waiting by the phone for news about Mom.

My sister's sick too--she's taken the rest of this week off work already, and she wouldn't do that unless she were really sick.  

The incubation period for the flu is 1-4 days.  One daughter and I got it on the same day.  We could have gotten this when we all went out to eat together one night last week.

Sometimes I think I should stay home from about December to March.  Some day when I'm old and living alone, I'm going to give it serious consideration.  Stock up on supplies and just hunker down until spring.

Mom would enjoy that--hunkering down 'til spring I mean, not my months-long disappearance.  Anyway, we'd still have the phone, so we could talk to each other.

I hope she's okay.

Monday, January 7, 2013

Doctors, Not Patients, Need to Take Out-of-Control Asthma Seriously

Still can't breathe.  My husband called the doctor from work today.  No way for me to go in with four sick kids and nobody to watch them.  They're too sick to even dress themselves so they can go somewhere, and the only person I know who could watch them (my parents)--well, my mom has the flu now, too.  If my husband takes care of them, there's nobody to take me to the doctor.  Ack.  And the reason my husband called the doctor instead of me?  Because they tend to take him seriously.  It's not as if I have a history of calling these people and then having nothing wrong with me, but over the years, whatever doctor I have, it's the same thing--just wait, you just have a cold, there isn't anything else we can do.

They're probably going to prescribe me prednisone--probably eke it out 20mg at a time.  I'm past the point of that doing much good now.

We've talked about getting somebody from my husband's church or the lodge or something to take me to the doctor.  But the doctor is only open while my husband is at work--once again, who will keep an eye on the kids?  We had this all worked out, so I would be able to go to the doctor, but we didn't count on everybody I know getting sick at the same time.

I'm pretty frustrated.  The doctor at the ER Saturday was nice, but it's so difficult to get anybody to understand that in 24 hours my asthma will be completely out of control and that I might be sick for weeks or months.  I'm not being a hypochondriac.  Really.  I've been through this literally a hundred times before.  And here I am again, sitting in the same pajamas I've been wearing since Saturday night.  I'm scaring the children again with my periodic gasping for breath.  Once in a while I get up and do one or two small chores.  Have to take care of the pets, at least.  A couple of the girls are feeling well enough to stagger up and do a couple of things, too.

This is ridiculous.  If you look up 'out of control asthma' on the internet, you see a lot of advice on how to take your asthma seriously and not let it get out of control.  But a peak flow meter is a joke for me.  And Saturday, the doctor said my lungs were clear, even though I could tell it was coming--the shortness of breath, the occasional coughing spell--that's all I need to predict another long drawn-out attack. 

I don't have allergies.  I only get this when I get a cold or some kind of a sinus infection or the flu.  And I know the instant I get the sniffles that I'm in serious danger.  Here I am, sitting at the computer, working hard for every breath--I don't need a peak flow meter to tell me I'm in trouble.  I can't breath well enough to carry on a conversation.  I'd have to be in a persistent vegetative state not to know this is bad.

I take my inhaler dutifully, but I can't even take a deep breath, and if I do, I can't hold it.  All I can do is try to take a deep breath, suck in the inhaler meds, and then let loose with another out-of-control coughing spasm.  All of this means I don't get a good dose of medicine.  A nebulizer doesn't really help, either.

What I need is for doctors to realize what trouble I'm getting into when I get sick.  I should not be sitting here fighting for every single breath all day long, day after day.  The advice not to let my asthma get out of control is useless.  The doctors need advice--they need to be advised not to let this get out of control.  Maybe there's nothing that can be done.  But they could often try harder.  At least some of this could be avoided.

I am tired of not being taken seriously.  I am not a whiny hypochondriac.  Well, today, I might be whiny, but I'm not a hypochondriac.  If anything, I don't go to the doctor soon enough, because I'm afraid I won't be sick enough yet to be taken seriously if I do.  And I'm usually right.  I seriously despise going to doctors.

It's taken me years to admit to myself that I need to rest when I'm sick--even now, I still automatically push myself to keep going no matter what, so I won't get accused of having some kind of a psychological problem, or of just being plain lazy.  I don't understand how I can be this sick and have it be my little secret.

It was a good thing to go to the ER this time before I got too sick to talk--I was able to interrupt the doctor a couple of times and say, look, I've been through this over and over again before--I get sent home from the ER two or three times, and then end up as an inpatient for several days.  I have a long history of getting really sick.  How can this medical history not be relevant when I go in to the doctor today?

I just want to be well.

Sunday, January 6, 2013


OK, I hate word bubble now.  I'm going to have to play something else tomorrow.

Here's a video from what may be my favorite blog (besides mine, of course).  I really liked this:


Oh, and here's my current desktop picture of the week award--from Aurora Borealis on fb.  I have a slight thing for owls:

OK, I can't get it.  Here's a link: .

And here's some more owls--what is it with owls and me this week?:

'Night for real!

Religion, Politics, Drugs, Sex, and Word Bubble

I've thought about posting this week, but with my family in town and all, I never got around to it until yesterday.  Well, I'm still sick, so I might be posting a bit more in the near future.  Hopefully not too much more, but the way it is with me, I may very well be sitting in this chair with this laptop until spring.  Not trying to be pessimistic--that's just the way it often is with me.  Last year I was sick for months  You can read about it at  I would if I were you, but then, I'm pretty bored right now.

We're watching 'The Adjustment Bureau' right now.  Good movie, seen it before.

I'm worse than I was yesterday.  Yesterday I was able to walk into the hospital ER.  Today I'd need a wheelchair.  My asthma is so bad I haven't been able to do anything except grab a quick breakfast and take my meds.  I'm still in my pajamas.  My husband took the now-only-remaining-healthy-kid to church this morning.  I'll have to ask for lunch when they get back.  Food isn't really looking appetizing right now, but I do want to do what I can to stay healthy.  That reminds me, I haven't taken my vitamin this morning.  It's off in a drawer along with my toothpaste and all those other things I usually use in the morning but haven't today.

Church, that reminds me....I'd given some serious thought to going back to my old blog (debsisland).  I finally decided that I really don't give a d*** what anybody thinks.  However, my kids are still going to church and having to deal with my in-laws and people in town, so I've decided to keep this the way it is.  I'd rather not make waves for them.  Odds are, nobody we know will actually find me here.  Heck, even total strangers hardly ever find me here. :)  I've already given my girls permission (in case they need it) to practice whatever religion they like (or no religion at all).

Church....I've been giving religion some thought lately.  I haven't really accomplished anything.  I'm not really sure what it is I expect to accomplish.  I've studied a bit of Kabbalah, a bit of Wicca, read a lot of different books.  I just bought a book on Tao.  I haven't found anything that I really want to commit to.  What I see is a whole lot of different groups of people giving God (or Goddess, or Gods, or whatever) a whole lot of different names.  And then assuming that anybody who calls God a different name is wrong, and possibly even evil.  Then they make up a whole lot of rules about how this God requires worship and tribute, and more rules about lots of things people shouldn't do because they might offend this God.  And, of course, people in all sorts of desperate (or even not so desperate) situations beg their God for help.  Sometimes they get help, sometimes they don't.

Meanwhile, while this God whose name we don't know is busy being worshipped and begged for things and plied with gifts, and possibly (depending on which name of God you subscribe to) meting out rewards and punishments, there is a whole lot of suffering going on.

The whole world is full of suffering.  We're born, we get sick and hurt, we lose things and pets and people.  One day we die.  And the suffering seems to be divvied up pretty unfairly, and according to no particular rhyme or reason.  'Good' people get sick and die.  'Bad' people live long healthy lives.  Sometimes I think God's not a very nice person.  Of course, I wouldn't want to say that out loud--I might make him mad.

It's not too much to ask--all I want is the reason why we're all here, the meaning of life.  The same thing billions of other people want.  Reassurance that there is actually somebody (kind-hearted, hopefully) in control, a purpose for the suffering.  Some kind of fairness when it's all said and done.  I want to know that I have some kind of a soul, and that it will continue after my death.  I want to know that some part of me will remember Chopin.  I want to meet my first cat again.  I want to keep my house on my little island.  Of course, I'd rather not relive being sick again, and there are lots of other things I'd rather not spend eternity doing.  Being burned in everlasting flames.  Getting a root canal.  Cleaning the litter box.

It seems to me that a lot of people are in a whole lot of denial.  They wake up one morning and realize....'Hey, I'm going to suffer, sooner or later, unpredictably, possibly horribly, and eventually I'm going to lose everyone and everything I care about, and I'm not going to live forever, and I don't know what will happen after I die, and I don't even know what we're all doing here in the first place.  So....I'll just go into denial, and I'll pretend I can control God's behavior with bribery, or begging, or flattery, or behaving well enough.  I think I'll call God ______ and pretend he looks like ______.  There.  I feel better now.'

Some people try really hard to be good people while they're worshipping ______.  Some of them apparently just pretend to worship ______ because the people around them are, and continue behaving just as they'd like.  Maybe it never occurs to most people to give any real thought to their behavior and why they do the things they do, good or bad.  After all, that's just going to mess up the denial.

In the absence of religion, there are plenty of other things we can distract ourselves with--food, drugs and alcohol, politics, sex, career, money, sports, Chopin--the list is endless.  If you don't think these things are substitutes for religion, try telling somebody who only buys organic food that you're going to eat a twinkie.  Or tell someone of either political party that you're a feminist who is against abortion.  Violate somebody's expectations about who you'll have sex with.  Be a stay-at-home mom without a career.  Root for the other team.

Well, only-remaining-healthy-kid is home now, and she's sick.  So is my mother.  If my husband gets sick, it could all be up to me.  I'm sure glad I watered and fed all the pets and hauled firewood before it got this bad. 

I've prayed to God--I've prayed before.  Begged and pleaded, quite sincerely.  But I'm still sick.  Can't really blame God for that, can I?  Lots of people (of every denomination) get sick.  Almost everybody in the room is sick right now.  As if that makes it better--well, God isn't just angry at me, he's angry at everybody!  And I could always be sicker.  I should just be grateful it's not worse, right?

I think I'll go play some more Word Bubble now.

Saturday, January 5, 2013

Has Anybody Seen My Will to Live?

Well, it's been a little while since I've written.  I've been kind of depressed lately.  Stopped playing the piano, even--I really do know better than that.  No wonder why I've been a bit down, though--my only friend suddenly up and leaving me, the ongoing Social Security nightmare, crappy weather that keeps me cooped up indoors a lot, and a couple of serious relationship problems with a couple of close people in my life.  Sorry to disappoint you, but I probably won't be discussing anything all that personal in this public (hey, it's possible somebody could actually read it) forum.  It's one thing for me to 'bare it all'--I won't be baring anybody else's soul, at least not without their permission.  Suffice it to say--I do not like soap operas, and experiencing one in real life is even worse than watching one on TV.

Christmas really sucks when things aren't going well.

At least I got one Christmas wish--I stayed well enough to visit with my sister, niece, and brother-in-law this week.  Until their last day.  Maybe there is a God after all.  We had a lot of fun.  My niece and her cousins (my daughters) and I played a lot of hide and seek.  Best places to hide--in the store room behind boxes (if you can be quiet even when they're convinced you'd have run out when they turned the lights out), and in a closet behind clothes, wearing black pants, with your feet behind a vacuum cleaner.  And I got to spend a lot of time hanging out with some of my favorite people.  We got to eat out a lot (and I haven't even gained weight over the holidays).  And there were even presents--clothes and jewelry and books and gift cards and cash, puzzles and games.  And there was fudge and cookies.

Wednesday morning on the way in I stopped at the dollar store for my week-and-a-half-late every-other-week shopping.  Then Thursday morning I went to the grocery store.  A couple of kids complained--they were already a bit overwhelmed by this week.  But I do like to stay stocked up, just in case....

(bit of foreshadowing here in case you missed it)

And then Friday I got really tired.  I kept trying to play hide and seek--it was my last day to spend with my niece, after all.  I went to Wal-Mart with my daughters and sister.  By the time we went out to eat, I felt like crap.  I am at a point in my life where I can't decide whether to try to keep up the pretense that I'm not really sick, or insist that I am so sick and that people take me seriously, damn it.  So I drank four Mountain Dews, and then I was able to function.  My 13yo wasn't so lucky--she hadn't even eaten anything since breakfast and just laid around on the couch all day.

We drove home after dinner.  The roads were hideous--snow was drifting everywhere.  Somehow we made it--my husband driving one vehicle and me driving the other.  Someone was even stuck in front of our little island.

It was dark outside, and I found myself taking turns (so I wouldn't screw up my back) doing chores and bringing in firewood until bedtime.  I hadn't slept well the night before, and I didn't sleep well last night, either.  Because I was busy getting sicker.

So this morning (after another round of chores on my part, as well as providing each and every single pet with fresh water and plenty of food in case I got even sicker) my husband took me and my 13yo to the ER.  Turns out we have the flu.  But I'm never content to just get the flu.  I've never just had anything in my entire life.  So I am also the proud owner of a double sinus infection, and bit of a double ear infection, and asthma.

Fortunately, the doctor was pretty cool, and I was still healthy enough to advocate for myself.  My daughter and I got to share an ER room.  We even got matching bracelets.  I keep telling her we're a lot alike.  She somehow fails to appreciate this.

Now I've got antibiotics, and an inhaler (which seems to be working a little bit, probably because I didn't wait as long as I normally would to get help (because doctors often like to tell me I'm not sick enough yet when I show up)), and two nasal sprays.  On the way out the door attendant told me to have a good day, and I said, 'probably not'.  I still have my sense of humor.  All is not lost.

My husband said something about lunch out while we waited for prescriptions, but my daughter and I wanted to stay in the car.  And then it dawned on me.

Nobody with the flu would want to eat out.  I have played hide and seek, shopped, eaten out, done chores, hauled wood, and taken care of pets--with the flu, a double sinus/ear infection, and asthma.  I'm so used to keeping going no matter what, I have no concept of what it's like for a normal person to get sick.

And then we finally got home, and....another man down (rather, a woman)--my 16yo has it, too.  When I walked in, I sort of collapsed.  I am done.

The twins will be cooking dinner tonight.  I've always told the girls that if everybody gets sick, whoever's left will be responsible for everything.  This is their golden opportunity to shine.  I'm glad I got the shopping done and tried to keep up the chores this week in spite of being gone most of every day.

Maybe this will give me plenty of time to whine blog.