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....
Wednesday, January 30, 2013
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....
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.
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.
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.
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.
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.
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.
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