I went to see the lawyer today. She was very nice. She very nicely let me know that she's done with my case. There just isn't enough evidence that there's enough wrong with me to warrant disability. I believe she actually felt sorry for me. She suggested a few things....working from home, for example. She didn't know how many times I've already looked into that.
You know, if I were actually disabled, there are agencies that would help me find a job.
Anyway, there's a review of the decision, all I have to do is fill out a piece of paper and send it certified mail. The lawyer said I could also fax it. I didn't feel like telling her I can't get to anywhere that faxes. Just didn't feel like explaining it again. I could also take it to the Social Security office in person. Can't find that either. But I filled out the paper and I'll take it to the post office. It's not as if I have anything to lose.
My husband may have jury duty. I said something to a relative about being glad it wasn't me, and the response was, why would I be glad, I've been to the courthouse before.
I'm tired of explaining. I'm tired of trying to make people believe me. I'm tired of educating people. Maybe I wouldn't mind so much if more than 1% of them actually learned something.
I'm just going to live to make me happy now. I'll try to be a good parent, and even a good pet owner. I care about my household. But I'm done trying to make people believe me, or make somebody hire me, or convince somebody that they really should like me because I'm a decent human being.
I'm just going to go on pretending everything is fine.
Some days my biggest enemy is loneliness. Other days it's boredom. At least the weather is nice here--sunny weather and open windows generally perk me up.
I think I might be happier not trying to change this situation than beating my head against that wall over and over and over and over and.....
It's fifteen years until early retirement--if I live long enough I'll collect that Social Security eventually. If my husband were to leave before that, well, I could just go live with my father, or with my sister. In the city. I don't at all relish the thought of being stuck indoors all the time. I spent some of my young adulthood that way, in between failed employment attempts. But there just isn't any point in thinking about it.
I'm going to have to be pickier about what I think about.
Something's come up a couple of times now, and I've wondered if God (whoever she/he/it is) is trying to tell me something. It's been about how people in Nazi concentration camps found happiness even in their circumstances. If they can do it, I ought to be able to. Maybe God's been telling me to stop feeling sorry for myself.
Wednesday, May 1, 2013
Monday, April 15, 2013
The Social Security Decision
And the results are (finally) in--I've been denied. The social security hearing seemed to go well, but the judge found me only 'partly' credible.
Part of the problem was that I was unable to get medical care for a few years--living in poverty with no insurance means you only go in if it's a dire emergency. Respiratory distress (in the literal, medical sense) isn't sufficient. Another part of the problem is the lack of official diagnosis for the visual memory problem I have. Being unable to recognize my own family members isn't sufficient for that, either. I have to be able to prove it, and I can't.
And then there's the opinion about my two sick visits to doctors this last winter.
The first one was for a double sinus infection and a double ear infection. I had a fever. The doctor looked in my ears. She took my word for it about the sinuses after that.
The second one was for the flu. I had a fever. My blood pressure (normally normal) was almost 200. My kid had the flu, too, and we both went to the ER together, driven there by my husband. And then I spent the next month recuperating--three weeks after the worst part of the flu was over, I was still not breathing well enough to walk anywhere--I had to be dropped off at the door when I visited my mother in the ICU. I couldn't go shopping. I probably spent two weeks including the flu just sitting in that damn Chair.
The judge wrote in her decision that I had two sick visits for the 'common cold'.
It makes me sound like a horrible hypochondriac.
But everything is fine, right?
Part of the problem was that I was unable to get medical care for a few years--living in poverty with no insurance means you only go in if it's a dire emergency. Respiratory distress (in the literal, medical sense) isn't sufficient. Another part of the problem is the lack of official diagnosis for the visual memory problem I have. Being unable to recognize my own family members isn't sufficient for that, either. I have to be able to prove it, and I can't.
And then there's the opinion about my two sick visits to doctors this last winter.
The first one was for a double sinus infection and a double ear infection. I had a fever. The doctor looked in my ears. She took my word for it about the sinuses after that.
The second one was for the flu. I had a fever. My blood pressure (normally normal) was almost 200. My kid had the flu, too, and we both went to the ER together, driven there by my husband. And then I spent the next month recuperating--three weeks after the worst part of the flu was over, I was still not breathing well enough to walk anywhere--I had to be dropped off at the door when I visited my mother in the ICU. I couldn't go shopping. I probably spent two weeks including the flu just sitting in that damn Chair.
The judge wrote in her decision that I had two sick visits for the 'common cold'.
It makes me sound like a horrible hypochondriac.
But everything is fine, right?
Sunday, April 14, 2013
Everything is Fine.
Well, I just keep slogging along. My husband left recently for a two-week stint in El Salvador with the National Guard. I've made a bit of a party out of it--Friday the girls and I went shopping, and we had a little bit of fun. I figured it would be inadvisable to eat doughnuts, Oreos, and frozen foods for two weeks straight, but we got a few fun things. So Friday night we had frozen pizza and little bags of chips, and yesterday morning I made refrigerator-roll cinnamon rolls. We skipped school Saturday. However, I am immovable--we will be doing school for the next two weeks starting Monday, in spite of any begging and/or pleading from the girls. On guard weekends, we don't do school. But two weeks is too long.
We were as far ahead on attendance at Christmas as we ever have been, but after Christmas break, and that horrible flu everybody got, and the funeral, and my sister coming to visit last week (always a good thing)....well, that's life for you.
I've been trying to figure out how to get my two older girls to church this morning and their youth group tonight. But after driving into town, there isn't anyplace to go. I'm lucky right now to have enough cash to get dinner for myself and the twins if need be, but after that....it's kind of jarring to realize that there isn't anyplace I can drive to that's open on a Sunday. My old standby, the library, is closed.
When my husband has to take the girls somewhere, he's got dozens of places he can go. He can drive all sorts of places that I can't. For me, the highway through the town where the church is located is the town. Everywhere else is off-limits. And the highway consists of fast food places and gas stations and stores. No place to hang out for a couple of hours. I don't really want to sit with the twins in a parking lot somewhere.
And my husband has dozens of friends to stop and visit. I have none. Not a single one. Of course, if I did, I wouldn't be able to find them anyway. But still, it's jarring to realize that if something were to happen to our plumbing, my only options would be to call my father and ask for money to hire a plumber, or call some near-stranger who happens to live nearby and explain the situation. If the car were to break down, we might be stranded here for two weeks. Good thing we went shopping.
This life has certainly taught me to be prepared, and to think in terms of independence. I'm on my own here.
It's tough trying to make people understand why I can't drive places, or why I can't do the simplest of home repairs. A couple of weeks ago my sister had what might be an excellent suggestion--dark glasses. If people thought I were visually impaired, that might solve a lot of problems. They wouldn't expect me to recognize them. They wouldn't expect me to drive. They might understand why I have trouble fixing things.
I've also thought about claiming to have had a stroke. People are more familiar with strokes. "Since the stroke, I don't drive much," is understandable.
So here I am, trying to have a bit of a party with our new internet service. Finally, finally we've gotten rid of Verizon's $140 a month plan with the strict gigabyte limit and on-again-off-again service. We now have DSL (from Frontier), and, for the first time, we can get streaming video from Netflix. Add frozen pizza, and instant party.
I am tired of trying to make the best of things. As in, "Well, you can't go to church or youth meeting, but look, nachos for dinner tonight! Won't that be fun!" It's a better attitude on my part, I suppose, than wallowing in self-pity all day long.
I've been fighting off a bit of depression lately. Only for the last third of a century or so. I get tired of trying to make the best of things and pretend that there's actually any expectation that my life is ever going to change. Like, maybe some day I'll get a job, or make new friends.
I ran into an old friend who dumped me unexpectedly a while back, at the grocery store Friday. We both smiled. It's great to see you! Everything is fine, right? She seemed surprised to see me--yep, I'm still alive, still have to buy groceries.
I read something in the news today about a girl born with a severe facial disfigurement--wait, I'll go find it, don't go away....
Here it is: http://edition.cnn.com/2013/04/14/health/loker-profile/index.html?sr=fbmainintl .
She seems to have a wonderful attitude. But she may never get married and have children. And some of the things she said sounded just like me. She dealt with constant name-calling. "By the time she reached high school, she had learned there would be no friends, parties or dates...."
It's occurred to me that if I'm so messed up neurologically that I can't have any friends, can't work, can't volunteer or go to church, if all I can do is stay home, that even without the illness I don't see why people don't consider me disabled. I don't think most people know me well enough to see what's happening here. It's as if even the disability organizations don't find me acceptable.
And now that my husband has left for El Salvador, we're fully expecting the girls' medicaid to be cancelled.
I'm not in a great place as far as my fellow human beings are concerned, and I don't know how to fix that. I'm thinking that if I simply expected people to accept me the way I am after all this time, it might be a symptom of mental illness on my part.
Somebody was nice to me on facebook this morning, and the first reaction I had was anger. I don't want you to try to be my friend. Acquaintances are fine. They can come and go, I can read their posts and pretend to have some kind of a social life, and pretend that everything is fine. But I certainly don't want to get any closer than that.
I wouldn't get married again if Gerard Butler himself showed up in my doorway with flowers and chocolates. I wouldn't do that to anybody else. My husband is married to somebody that he can't take anywhere. I contribute no income. His friends won't talk to me, and almost all of his family. Sometimes I can't even do housework. It's as if I died and he's a widower. I don't get disability or welfare. If he left, I'd have to move back in with my family.
It wasn't supposed to be like this.
Yesterday we made a big batch of chili and watched more movies. I paid the electric bill. Today I got in a shower before the girls woke up. This is my life now. In some ways it's good--I have lots of time on my hands, which a lot of people don't have. It's cozy in the house while it's been cold and clammy and dark outside this week.
So I'll just keep pretending everything is fine.
We were as far ahead on attendance at Christmas as we ever have been, but after Christmas break, and that horrible flu everybody got, and the funeral, and my sister coming to visit last week (always a good thing)....well, that's life for you.
I've been trying to figure out how to get my two older girls to church this morning and their youth group tonight. But after driving into town, there isn't anyplace to go. I'm lucky right now to have enough cash to get dinner for myself and the twins if need be, but after that....it's kind of jarring to realize that there isn't anyplace I can drive to that's open on a Sunday. My old standby, the library, is closed.
When my husband has to take the girls somewhere, he's got dozens of places he can go. He can drive all sorts of places that I can't. For me, the highway through the town where the church is located is the town. Everywhere else is off-limits. And the highway consists of fast food places and gas stations and stores. No place to hang out for a couple of hours. I don't really want to sit with the twins in a parking lot somewhere.
And my husband has dozens of friends to stop and visit. I have none. Not a single one. Of course, if I did, I wouldn't be able to find them anyway. But still, it's jarring to realize that if something were to happen to our plumbing, my only options would be to call my father and ask for money to hire a plumber, or call some near-stranger who happens to live nearby and explain the situation. If the car were to break down, we might be stranded here for two weeks. Good thing we went shopping.
This life has certainly taught me to be prepared, and to think in terms of independence. I'm on my own here.
It's tough trying to make people understand why I can't drive places, or why I can't do the simplest of home repairs. A couple of weeks ago my sister had what might be an excellent suggestion--dark glasses. If people thought I were visually impaired, that might solve a lot of problems. They wouldn't expect me to recognize them. They wouldn't expect me to drive. They might understand why I have trouble fixing things.
I've also thought about claiming to have had a stroke. People are more familiar with strokes. "Since the stroke, I don't drive much," is understandable.
So here I am, trying to have a bit of a party with our new internet service. Finally, finally we've gotten rid of Verizon's $140 a month plan with the strict gigabyte limit and on-again-off-again service. We now have DSL (from Frontier), and, for the first time, we can get streaming video from Netflix. Add frozen pizza, and instant party.
I am tired of trying to make the best of things. As in, "Well, you can't go to church or youth meeting, but look, nachos for dinner tonight! Won't that be fun!" It's a better attitude on my part, I suppose, than wallowing in self-pity all day long.
I've been fighting off a bit of depression lately. Only for the last third of a century or so. I get tired of trying to make the best of things and pretend that there's actually any expectation that my life is ever going to change. Like, maybe some day I'll get a job, or make new friends.
I ran into an old friend who dumped me unexpectedly a while back, at the grocery store Friday. We both smiled. It's great to see you! Everything is fine, right? She seemed surprised to see me--yep, I'm still alive, still have to buy groceries.
I read something in the news today about a girl born with a severe facial disfigurement--wait, I'll go find it, don't go away....
Here it is: http://edition.cnn.com/2013/04/14/health/loker-profile/index.html?sr=fbmainintl .
She seems to have a wonderful attitude. But she may never get married and have children. And some of the things she said sounded just like me. She dealt with constant name-calling. "By the time she reached high school, she had learned there would be no friends, parties or dates...."
It's occurred to me that if I'm so messed up neurologically that I can't have any friends, can't work, can't volunteer or go to church, if all I can do is stay home, that even without the illness I don't see why people don't consider me disabled. I don't think most people know me well enough to see what's happening here. It's as if even the disability organizations don't find me acceptable.
And now that my husband has left for El Salvador, we're fully expecting the girls' medicaid to be cancelled.
I'm not in a great place as far as my fellow human beings are concerned, and I don't know how to fix that. I'm thinking that if I simply expected people to accept me the way I am after all this time, it might be a symptom of mental illness on my part.
Somebody was nice to me on facebook this morning, and the first reaction I had was anger. I don't want you to try to be my friend. Acquaintances are fine. They can come and go, I can read their posts and pretend to have some kind of a social life, and pretend that everything is fine. But I certainly don't want to get any closer than that.
I wouldn't get married again if Gerard Butler himself showed up in my doorway with flowers and chocolates. I wouldn't do that to anybody else. My husband is married to somebody that he can't take anywhere. I contribute no income. His friends won't talk to me, and almost all of his family. Sometimes I can't even do housework. It's as if I died and he's a widower. I don't get disability or welfare. If he left, I'd have to move back in with my family.
It wasn't supposed to be like this.
Yesterday we made a big batch of chili and watched more movies. I paid the electric bill. Today I got in a shower before the girls woke up. This is my life now. In some ways it's good--I have lots of time on my hands, which a lot of people don't have. It's cozy in the house while it's been cold and clammy and dark outside this week.
So I'll just keep pretending everything is fine.
Thursday, March 28, 2013
Give it up, you'll never be able to get a decent job, there is no place for you in our society, it's hopeless
Hi all (by all I mean, like, next to nobody).
This started out as an email and developed into a blog post. I was reading an article my sister sent me. And here's the article:
http://apps.npr.org/unfit-for-work/
It was a good article--except for the part where the author said that lots of people with asthma work. I spent a month having an asthma attack this winter, during which time I was definitely unable to work. For the first couple of weeks I would have been unable to even get myself ready to go to work, and for the next couple of weeks I still wouldn't have been able to walk from my car to my hypothetical job. I'm happy for people who can take a couple of puffs of an inhaler and go on with their lives.
But I try not to obsess over things like that.
I think the author, Mr. Joffe-Walt, has hit, in a tangential sort of way, on part of the reason for our society's economic problem.
Our standards for being an employable have gone way up over the last fifty years.
It used to be easier to get a job. If you were Mr. Joe Farmer and you wanted to provide for your family, common knowledge was all you needed. Most people knew enough about animal husbandry and planting a crop and food preservation to get the job done. Anything you didn't know, somebody around you probably did. You didn't need a degree, and you didn't have to fill out an application. And if you wanted to start a career as a blacksmith, for example, you might be able to get an apprenticeship.
You didn't even have to know how to read.
It's different now.
It's partly an intelligence issue. And we as a society are completely unwilling to address this. Half of our population has IQs under 100. Some of us can't read and write, or can't read and write well. And for some of us, no amount of education is going to change that. And we need to find a place for those of us who, through no fault of their own, are not going to succeed in the workforce as it is now.
A single person who wants to make enough money to have a decent life--an apartment, a car, utilities, maybe some decent clothes and furniture and an occasional meal out or a movie--is going to have to get a college education (unless they get very lucky). Even an individual who belongs to a couple who, between the two of them, want to make enough money to survive, is going to have to be able to fill out a job application, and is probably going to have to be able to type up a resume, and some of us just can't do it.
(And don't get me started on the paperwork in our society right now, in every aspect of life, not just job-hunting.)
Farming is a good example. It isn't what it used to be. You have to have a big tractor, and keep up with the EPA regulations, and do a lot of paperwork. It's not just the back-breaking labor of digging in the dirt any more. Manufacturing jobs are paying a lot less than they used to, and requiring a resume or job experience to begin with. Almost any decent job requires education and previous work experience.
If you have an IQ of 110, you can probably do reasonably well in school, and go to college, and enter the work force having a little job experience, and you might make it. Your parents probably made it, because there's a (dare I say it?) strong hereditary component to IQ. So you have their shoulders to stand on.
If your IQ is 90, well....
So there are a whole lot of people out there who would be happy to work if only they qualified, but they have no hope of doing so.
And then, in this dismal economy, employers don't have to be the nicest people. Let's face it, it's always been this way to some extent. If you're making $100,000 a year, your employer is statistically likely to be a lot nicer. People making $10,000 a year often get treated like dirt. Having had many different jobs over the years, I can attest to this personally. There are two very different worlds out there, one world where you wear nice clothes and eat out for lunch and get treated with respect, and another world where people are a lot less educated and polite and where you'd better learn your place very quickly. You shut up, keep your head down, and do as you're told.
Add to that the proliferation of two-employee families with children (not that I want to pass a law against that (shudder)), and you have another problem. An employer who insists you can only accrue sick days at one day a month (and vacation days might be a thing of the past). Once you have children, somebody has to take care of them when they're sick, take them to appointments, etc. Maybe you don't make any appointments you don't have to. And heaven help you if you get sick. A bad case of the flu that takes you out for a week or two may very well cost you your quite-undesirable-but-very-necessary-minimum-wage-without-benefits job. And good luck getting another one after you've got that blot on your record. And these people are not generally understanding if you have to leave work at five to go to a night class....
And if I'm right it's just going to get worse. Life is not showing any signs of getting less complicated.
Now if only I knew how to fix this....
This started out as an email and developed into a blog post. I was reading an article my sister sent me. And here's the article:
http://apps.npr.org/unfit-for-work/
It was a good article--except for the part where the author said that lots of people with asthma work. I spent a month having an asthma attack this winter, during which time I was definitely unable to work. For the first couple of weeks I would have been unable to even get myself ready to go to work, and for the next couple of weeks I still wouldn't have been able to walk from my car to my hypothetical job. I'm happy for people who can take a couple of puffs of an inhaler and go on with their lives.
But I try not to obsess over things like that.
I think the author, Mr. Joffe-Walt, has hit, in a tangential sort of way, on part of the reason for our society's economic problem.
Our standards for being an employable have gone way up over the last fifty years.
It used to be easier to get a job. If you were Mr. Joe Farmer and you wanted to provide for your family, common knowledge was all you needed. Most people knew enough about animal husbandry and planting a crop and food preservation to get the job done. Anything you didn't know, somebody around you probably did. You didn't need a degree, and you didn't have to fill out an application. And if you wanted to start a career as a blacksmith, for example, you might be able to get an apprenticeship.
You didn't even have to know how to read.
It's different now.
It's partly an intelligence issue. And we as a society are completely unwilling to address this. Half of our population has IQs under 100. Some of us can't read and write, or can't read and write well. And for some of us, no amount of education is going to change that. And we need to find a place for those of us who, through no fault of their own, are not going to succeed in the workforce as it is now.
A single person who wants to make enough money to have a decent life--an apartment, a car, utilities, maybe some decent clothes and furniture and an occasional meal out or a movie--is going to have to get a college education (unless they get very lucky). Even an individual who belongs to a couple who, between the two of them, want to make enough money to survive, is going to have to be able to fill out a job application, and is probably going to have to be able to type up a resume, and some of us just can't do it.
(And don't get me started on the paperwork in our society right now, in every aspect of life, not just job-hunting.)
Farming is a good example. It isn't what it used to be. You have to have a big tractor, and keep up with the EPA regulations, and do a lot of paperwork. It's not just the back-breaking labor of digging in the dirt any more. Manufacturing jobs are paying a lot less than they used to, and requiring a resume or job experience to begin with. Almost any decent job requires education and previous work experience.
If you have an IQ of 110, you can probably do reasonably well in school, and go to college, and enter the work force having a little job experience, and you might make it. Your parents probably made it, because there's a (dare I say it?) strong hereditary component to IQ. So you have their shoulders to stand on.
If your IQ is 90, well....
So there are a whole lot of people out there who would be happy to work if only they qualified, but they have no hope of doing so.
And then, in this dismal economy, employers don't have to be the nicest people. Let's face it, it's always been this way to some extent. If you're making $100,000 a year, your employer is statistically likely to be a lot nicer. People making $10,000 a year often get treated like dirt. Having had many different jobs over the years, I can attest to this personally. There are two very different worlds out there, one world where you wear nice clothes and eat out for lunch and get treated with respect, and another world where people are a lot less educated and polite and where you'd better learn your place very quickly. You shut up, keep your head down, and do as you're told.
Add to that the proliferation of two-employee families with children (not that I want to pass a law against that (shudder)), and you have another problem. An employer who insists you can only accrue sick days at one day a month (and vacation days might be a thing of the past). Once you have children, somebody has to take care of them when they're sick, take them to appointments, etc. Maybe you don't make any appointments you don't have to. And heaven help you if you get sick. A bad case of the flu that takes you out for a week or two may very well cost you your quite-undesirable-but-very-necessary-minimum-wage-without-benefits job. And good luck getting another one after you've got that blot on your record. And these people are not generally understanding if you have to leave work at five to go to a night class....
And if I'm right it's just going to get worse. Life is not showing any signs of getting less complicated.
Now if only I knew how to fix this....
Saturday, March 23, 2013
I'm back.
Hi. Sorry I haven't posted lately.
A few days after my last post, my mother passed away.
And I simply haven't wanted to talk about it. Then I found myself having my usual monthly weekend off (my husband has Guard duty), and for some reason I read a few of my old posts and decided to come back.
I've seriously gotten tired of posting about being sick and filling out paperwork, but I saw that I'd posted a lot of other 'stuff', and a lot that I would like to preserve, if only for my own children or grandchildren some day. It's also been a good record of my medical problems.
It was a good funeral, if a funeral can be said to be good. Everything went well. I got to meet some people I hadn't seen in many years. My sister did an excellent job of covering for me--I'd been worried about failing to recognize people I was supposed to recognize. (I was kind of dreading it--having to try to function around a bunch of people I'm supposed to know and offending half of them.) She was great at, "Oh, hi Jane!" I spent a lot of time near her.
It was actually the most socialization I've had in a long time.
The day my mother died was the worst day of my life so far. At least I was healthy. It doesn't help to have to worry about being sick, or recognizing people, or finding the funeral home, while you're dealing with something like this. And me being more distractable than usual is not a pretty picture. It takes a fair amount of concentration to be me. One 'good' thing about having just experienced a death in the family--if you do anything stupid, people just assume you've been overcome with grief and forgive you unconditionally.
And our tax return came just a couple of days before. It's sad, but I'd been a little worried that none of us had appropriate clothing to wear for a funeral, and that we'd have to ask somebody to give us money so we could buy some. Not to mention money for gas to drive back and forth to town several times.
It's amazing how having a little money in the bank can make life a little easier to cope with.
And I got to meet my mother's sister, who I haven't met since I was seventeen--thirty years ago. We really hit it off. And I learned something--she has what she calls an 'all-faiths' altar at her house. Somewhat like my (somewhat) jokingly labeled practice of 'Eclecticism' these days. We had a wonderful time getting to know each other. She lives far away. She's just spent the last several years taking care of my grandmother, who recently passed away.
I am now considering an 'all-faiths' altar.
I have to mention the morning after the funeral. My aunt, my sister and I, and my four daughters and my sister's daughter were at my father's house. The men had gone to get some things from the funeral home. It was time to go through my mother's jewelry box. So my sister set everything out, and we took turns choosing pieces. My aunt had wanted one piece for her 'altar' (which had prompted me to question her later about her religious practices). After a few turns, we also let the granddaughters start taking turns. When it was all gone, my sister actually offered me the jewelry box. She's going to get it repaired and restored. I think the main reason she did that was because I still remembered the song it used to play many years ago. I'm not actually sure that's such an incredible feat--any more than recognizing a cousin you haven't seen in twenty years. I've been trying to find out what song it was for a while now, with no luck.
It was very much like a second funeral, a religious experience. People were impressed that my sister and I got along so well. Really, getting along with her isn't any great accomplishment--it's easy.
I've been talking to my sister and father every day since my mother was in the hospital. I used to talk to my mother every day. When you don't have very many people in your life, those few you do have become so very important. I'm lucky that my immediate family is made up of decent, kind-hearted people. Everybody isn't that fortunate.
Let's see--I've also been to my Social Security hearing. It went pretty well. The lawyer hadn't really expected it to, but the judge did seem to be impressed. I think I might have somehow managed to come across as credible. Must have been because I was telling the truth. Social Security has lost all my records concerning why I was booted off in 2006, which looked kind of funny, too.
Anyway, the judge did treat me with respect. She did ask me several questions repeatedly, and I'm fairly sure she was trying to 'trip me up'. Of course, it's easy to keep your story straight when you're telling the truth. It was as if she was trying to get me to answer differently at one point, and I almost got frustrated, as in, 'no, I told you it was this way.' I've always admired people who can communicate so well. She would have been a formidable person to argue with.
The vocational rehabilitation specialist was asked by the judge what kind of jobs I could do, and how many days I could miss. She seemed to think I would miss too many days if I were working. I'll have to try not to get my hopes up--I've already referred to this as 'a dress rehearsal for the next hearing'.
It would have been more difficult for me to talk about everything that is 'wrong' with me even a few years ago. It's still unnerving, being in front of a judge and a court reporter and a vocational rehabilitation specialist. But I've really been developing an attitude lately about having to apologize for why I am the way I am. I'm getting to be a lot more likely to declare that I won't attempt to do something that I know is going to be extremely difficult. I insist that I'm not going to improve any more than I have--and at forty-seven it does indeed seem ridiculous to expect much improvement when I've been trying for so long. Maybe if I had expert guidance I could improve some.
And, of course, I'd be happy to stop getting sick if I could. In fact, right now I'm still trying to decide whether or not I'll develop an ear infection (in my left ear as usual) from running errands the other day when it was windy. Maybe I should root for another infection--the Social Security people would like that. Anyway, I'm also getting to be a lot more likely to insist that I need to rest, or slow down, when I'm sick.
When I was reading old blog posts yesterday, I came across one from January of this year, where I wrote about coming down with the flu and going to my parents' house, going shopping at Wal-Mart, going out to eat, then driving home (in terrible weather), hauling wood, and then the next day hauling more wood and taking care of all the pets (in case I ended up in the hospital), and then going to the emergency room. I have to ask myself--am I nuts? Really? I had a temp, and this horrible flu, but I just drank four Mountain Dews and kept right on going. At least until I got back from the ER, when I finally collapsed.
And some people think I'm being lazy when I say I can't go on any more?
And (subject change warning) I was talking to my sister today and remembered an incident that I think helped my husband to understand why I'm struggling with so many neurological issues.
My husband was showing me how to run a new push mower. He was telling me about the red button on the left of the mower that I was to push several times to prime the engine. And then he stopped. And asked me if I was going to look at what he was showing me. And I said no. I was concentrating on remembering what he was telling me. There was no point trying to remember the picture.
Nothing wrong with my memory--I still remember where the button was. Just don't remember what the mower looked like. Or my husband.
Well, that's it for now. We're expecting 4-8 inches of snow tomorrow. I'll try to blog sooner next time!
A few days after my last post, my mother passed away.
And I simply haven't wanted to talk about it. Then I found myself having my usual monthly weekend off (my husband has Guard duty), and for some reason I read a few of my old posts and decided to come back.
I've seriously gotten tired of posting about being sick and filling out paperwork, but I saw that I'd posted a lot of other 'stuff', and a lot that I would like to preserve, if only for my own children or grandchildren some day. It's also been a good record of my medical problems.
It was a good funeral, if a funeral can be said to be good. Everything went well. I got to meet some people I hadn't seen in many years. My sister did an excellent job of covering for me--I'd been worried about failing to recognize people I was supposed to recognize. (I was kind of dreading it--having to try to function around a bunch of people I'm supposed to know and offending half of them.) She was great at, "Oh, hi Jane!" I spent a lot of time near her.
It was actually the most socialization I've had in a long time.
The day my mother died was the worst day of my life so far. At least I was healthy. It doesn't help to have to worry about being sick, or recognizing people, or finding the funeral home, while you're dealing with something like this. And me being more distractable than usual is not a pretty picture. It takes a fair amount of concentration to be me. One 'good' thing about having just experienced a death in the family--if you do anything stupid, people just assume you've been overcome with grief and forgive you unconditionally.
And our tax return came just a couple of days before. It's sad, but I'd been a little worried that none of us had appropriate clothing to wear for a funeral, and that we'd have to ask somebody to give us money so we could buy some. Not to mention money for gas to drive back and forth to town several times.
It's amazing how having a little money in the bank can make life a little easier to cope with.
And I got to meet my mother's sister, who I haven't met since I was seventeen--thirty years ago. We really hit it off. And I learned something--she has what she calls an 'all-faiths' altar at her house. Somewhat like my (somewhat) jokingly labeled practice of 'Eclecticism' these days. We had a wonderful time getting to know each other. She lives far away. She's just spent the last several years taking care of my grandmother, who recently passed away.
I am now considering an 'all-faiths' altar.
I have to mention the morning after the funeral. My aunt, my sister and I, and my four daughters and my sister's daughter were at my father's house. The men had gone to get some things from the funeral home. It was time to go through my mother's jewelry box. So my sister set everything out, and we took turns choosing pieces. My aunt had wanted one piece for her 'altar' (which had prompted me to question her later about her religious practices). After a few turns, we also let the granddaughters start taking turns. When it was all gone, my sister actually offered me the jewelry box. She's going to get it repaired and restored. I think the main reason she did that was because I still remembered the song it used to play many years ago. I'm not actually sure that's such an incredible feat--any more than recognizing a cousin you haven't seen in twenty years. I've been trying to find out what song it was for a while now, with no luck.
It was very much like a second funeral, a religious experience. People were impressed that my sister and I got along so well. Really, getting along with her isn't any great accomplishment--it's easy.
I've been talking to my sister and father every day since my mother was in the hospital. I used to talk to my mother every day. When you don't have very many people in your life, those few you do have become so very important. I'm lucky that my immediate family is made up of decent, kind-hearted people. Everybody isn't that fortunate.
Let's see--I've also been to my Social Security hearing. It went pretty well. The lawyer hadn't really expected it to, but the judge did seem to be impressed. I think I might have somehow managed to come across as credible. Must have been because I was telling the truth. Social Security has lost all my records concerning why I was booted off in 2006, which looked kind of funny, too.
Anyway, the judge did treat me with respect. She did ask me several questions repeatedly, and I'm fairly sure she was trying to 'trip me up'. Of course, it's easy to keep your story straight when you're telling the truth. It was as if she was trying to get me to answer differently at one point, and I almost got frustrated, as in, 'no, I told you it was this way.' I've always admired people who can communicate so well. She would have been a formidable person to argue with.
The vocational rehabilitation specialist was asked by the judge what kind of jobs I could do, and how many days I could miss. She seemed to think I would miss too many days if I were working. I'll have to try not to get my hopes up--I've already referred to this as 'a dress rehearsal for the next hearing'.
It would have been more difficult for me to talk about everything that is 'wrong' with me even a few years ago. It's still unnerving, being in front of a judge and a court reporter and a vocational rehabilitation specialist. But I've really been developing an attitude lately about having to apologize for why I am the way I am. I'm getting to be a lot more likely to declare that I won't attempt to do something that I know is going to be extremely difficult. I insist that I'm not going to improve any more than I have--and at forty-seven it does indeed seem ridiculous to expect much improvement when I've been trying for so long. Maybe if I had expert guidance I could improve some.
And, of course, I'd be happy to stop getting sick if I could. In fact, right now I'm still trying to decide whether or not I'll develop an ear infection (in my left ear as usual) from running errands the other day when it was windy. Maybe I should root for another infection--the Social Security people would like that. Anyway, I'm also getting to be a lot more likely to insist that I need to rest, or slow down, when I'm sick.
When I was reading old blog posts yesterday, I came across one from January of this year, where I wrote about coming down with the flu and going to my parents' house, going shopping at Wal-Mart, going out to eat, then driving home (in terrible weather), hauling wood, and then the next day hauling more wood and taking care of all the pets (in case I ended up in the hospital), and then going to the emergency room. I have to ask myself--am I nuts? Really? I had a temp, and this horrible flu, but I just drank four Mountain Dews and kept right on going. At least until I got back from the ER, when I finally collapsed.
And some people think I'm being lazy when I say I can't go on any more?
And (subject change warning) I was talking to my sister today and remembered an incident that I think helped my husband to understand why I'm struggling with so many neurological issues.
My husband was showing me how to run a new push mower. He was telling me about the red button on the left of the mower that I was to push several times to prime the engine. And then he stopped. And asked me if I was going to look at what he was showing me. And I said no. I was concentrating on remembering what he was telling me. There was no point trying to remember the picture.
Nothing wrong with my memory--I still remember where the button was. Just don't remember what the mower looked like. Or my husband.
Well, that's it for now. We're expecting 4-8 inches of snow tomorrow. I'll try to blog sooner next time!
Thursday, February 7, 2013
The Cleveland Clinic Trip
Well, my mother is doing a little bit better. We've had some ups and downs (and I'm sure there are more to come), but today her color is better and she was opening her eyes and looking at people better than she had been before.
I was happy to be able to walk up and down a few stairs in the hospital. I'm doing pretty well. I'm going to try to exercise for a few minutes at a time tomorrow.
I've been pretty busy--Cleveland Clinic Tuesday (more on that in a minute), all kinds of shopping yesterday (our tax refund came in--time to get the girls a couple of articles of clothing or a pair of shoes, buy a few things for the house, get the kitchen stocked up--go to the dentist, get the brakes tuned up on the van, etc.). Today we went up the the hospital to visit Mom and to the library. Meanwhile I've been trying to keep the housework up in between going places. I've been a bit tired lately--maybe it's just that I'm still recovering from the flu.
The Cleveland Clinic was good--my husband came along to play his ongoing role as the six-foot-two bobble head doll. I say I'm sick and he nods his head up and down. While with my autism and lack of 'normal' expression, I don't think I come across as believable, my husband does. He has credibility. And I think it helps just to have another person agreeing that I'm sick. Maybe it even helps that he's male. Women do get labeled as hypochondriacs more often than men.
So the doctor believed that it's not allergies, and seemed to take me quite seriously. I had a couple of breathing tests, some subcutaneous tests on my arm, a cat scan, and three vials of blood taken. I'm even getting tested to see if the pneumonia vaccine I had a few months ago 'took'.
I almost laughed out loud when the doctor turned to me and informed me, "Your asthma is poorly controlled." I managed to get by with a, "Yes, I know." But he really seemed like a good guy. And he knows more about what's wrong with me than I do--a pleasant change of pace for me. He had a definite reaction to my former specialist having said I was all better. Most doctors don't even know how ridiculous that statement was. But this doctor did say that he can basically 'cure' me, or at least bring the symptoms under control. I'm sorry, but I've heard it before. With each doctor. He gave me a new inhaler. It's this year's new inhaler, so I haven't tried it yet. But maybe I can at least get an accurate diagnosis, and maybe, just maybe, I can get at least a little bit better control of the asthma. As for the immune deficiency, I don't think Tricare even covers the IVIG treatments. That is, if what I have is CVID and not Selective IgA, or something else entirely, or nothing at all.
And I got a card from one of the people I bitched and whined about in my last post. I sent a short email back. I'm just barely stupid enough to think it will do any good. I suppose it's best not to burn bridges, although perhaps some bridges should be burned. Burned, blown up, and the wreckage hacked to bits.
Tomorrow we'll have the second day of homeschooling we've had this week. It's been a bad year for attendance so far, but we've been so good in general that I don't feel too badly about it. One of my homeschooling philosophies is that my children should learn what's really important, and visiting my mother is really important. And getting me on Social Security is really important, too--someday it just might keep a roof over my children's heads. Not to mention taking care of my health might be a good idea. And if it is IgA deficiency, any or all of my children could have it. You can be completely asymptomatic and have this. You can also pass it on to your children. One of my girls has had several serious illnesses and severe asthma attacks over the years. Even my sister and/or niece could have it.
And then this weekend my husband has guard. By then I'm probably going to feel like I can use a bit of a vacation.
I was happy to be able to walk up and down a few stairs in the hospital. I'm doing pretty well. I'm going to try to exercise for a few minutes at a time tomorrow.
I've been pretty busy--Cleveland Clinic Tuesday (more on that in a minute), all kinds of shopping yesterday (our tax refund came in--time to get the girls a couple of articles of clothing or a pair of shoes, buy a few things for the house, get the kitchen stocked up--go to the dentist, get the brakes tuned up on the van, etc.). Today we went up the the hospital to visit Mom and to the library. Meanwhile I've been trying to keep the housework up in between going places. I've been a bit tired lately--maybe it's just that I'm still recovering from the flu.
The Cleveland Clinic was good--my husband came along to play his ongoing role as the six-foot-two bobble head doll. I say I'm sick and he nods his head up and down. While with my autism and lack of 'normal' expression, I don't think I come across as believable, my husband does. He has credibility. And I think it helps just to have another person agreeing that I'm sick. Maybe it even helps that he's male. Women do get labeled as hypochondriacs more often than men.
So the doctor believed that it's not allergies, and seemed to take me quite seriously. I had a couple of breathing tests, some subcutaneous tests on my arm, a cat scan, and three vials of blood taken. I'm even getting tested to see if the pneumonia vaccine I had a few months ago 'took'.
I almost laughed out loud when the doctor turned to me and informed me, "Your asthma is poorly controlled." I managed to get by with a, "Yes, I know." But he really seemed like a good guy. And he knows more about what's wrong with me than I do--a pleasant change of pace for me. He had a definite reaction to my former specialist having said I was all better. Most doctors don't even know how ridiculous that statement was. But this doctor did say that he can basically 'cure' me, or at least bring the symptoms under control. I'm sorry, but I've heard it before. With each doctor. He gave me a new inhaler. It's this year's new inhaler, so I haven't tried it yet. But maybe I can at least get an accurate diagnosis, and maybe, just maybe, I can get at least a little bit better control of the asthma. As for the immune deficiency, I don't think Tricare even covers the IVIG treatments. That is, if what I have is CVID and not Selective IgA, or something else entirely, or nothing at all.
And I got a card from one of the people I bitched and whined about in my last post. I sent a short email back. I'm just barely stupid enough to think it will do any good. I suppose it's best not to burn bridges, although perhaps some bridges should be burned. Burned, blown up, and the wreckage hacked to bits.
Tomorrow we'll have the second day of homeschooling we've had this week. It's been a bad year for attendance so far, but we've been so good in general that I don't feel too badly about it. One of my homeschooling philosophies is that my children should learn what's really important, and visiting my mother is really important. And getting me on Social Security is really important, too--someday it just might keep a roof over my children's heads. Not to mention taking care of my health might be a good idea. And if it is IgA deficiency, any or all of my children could have it. You can be completely asymptomatic and have this. You can also pass it on to your children. One of my girls has had several serious illnesses and severe asthma attacks over the years. Even my sister and/or niece could have it.
And then this weekend my husband has guard. By then I'm probably going to feel like I can use a bit of a vacation.
Friday, February 1, 2013
I want to retire to an island x--(
Well, we have some almost hopeful news about my mother. She's been opening her eyes and looking at people. When I took my children up to the hospital to visit this afternoon, she looked at us, too. She looks terrible. And she's still on a feeding tube, and dialysis three times a week, and IV antibiotics. They're starting to talk about physical therapy, and about whether or not she'll be able to go home with my father (who can take care of her if she can be cared for at home--he's been doing it for a long time now) or go to a nursing home. She's not out of the woods yet, but there has been some improvement.
Mom is in an acute long-term care facility now, and it's in a location I'm quite familiar with, in another hospital. They even have free valet parking, which is really, really nice for somebody who can't walk more than a few car lengths in the cold without having an asthma attack. And when my father asked if I knew where the elevators were, I had the perfect excuse--I'd never been through the hospital's front door before. I always go in through the emergency room.
I get a little bit better every day. I can't be outside, or exercise yet, but I'm more comfortable now--my chest isn't as tight, I don't cough as much, or breath as hard.
I had a crabby discussion after we came home from the hospital with my general practitioner's office staff. They hadn't wanted to send my medical records to the Cleveland Clinic. I'd finally talked them into it, and today (wisely, if I do say myself) I checked with the Cleveland Clinic to see if my records had been received. Guess what. They hadn't. But not only had the records not been received--my GP's office staff had never heard of such a request. And when I told them I wanted records for CVID and asthma, the response was, 'so you want the records for asthma'. They don't know what CVID is (and why on Earth would I want to go to Ohio to see a doctor whose staff may have actually heard of what's wrong with me?). They couldn't understand why I'd want to go to the Cleveland Clinic when my GP hadn't recommended it. Not that he'd been against it when I'd spoken to him after making the appointment. He's always been supportive. Otherwise his staff would have chased me away by now.
And then....
I've given some thought to posting about this on the blog. I won't be naming any names or going into a lot of detail. At least, I don't think I will. Not today, anyway.
I'm very fortunate to have the family I have. They're not perfect people, but they're about as perfect as any others I'm likely to find. And they're not abusive--not physically, and not emotionally, either. They're my favorite people. :)
However, there are other people in my life who aren't so nice. One of them is actually quite physically abusive, although I haven't been a victim. I've been threatened, intimidated, stalked, and talked about behind my back, but not assaulted. The others have contented themselves with simply treating me like dirt and refusing to speak to me. And, wouldn't you know, they picked this time to rear their ugly heads.
They don't know that I've recently given up Christianity. At least one of them would get extremely upset about it--I'd bet all the cash in my purse. I'm refraining from mentioning it. At least one knows about my friend 'dumping' me two months ago. I'm not certain they know how sick I've been this month. They do know about my mother.
These are people I've basically cut out of my life as much as possible, mostly because I've gotten used, over the years, to being in possession of what little sanity I have, and I don't have any desire to part with any more of it. Over the last couple of years I've seen them rarely, and not spoken to them by phone or email more than a half a dozen times, out of necessity. And they've chosen this week to decide that they are unhappy with me about this. Of course, it wouldn't occur to any of them to offer an olive branch of friendship--instead they've spoken to another person in my life about how I should be talking to them, and about how this situation is all my fault. They don't understand why I don't talk to them.
There's also been some dispute about my mother's medical care--whether or not her situation is hopeless, whether she should continue to have medical care or be allowed to die. (This started just before my mother started opening her eyes, which they may not even know about yet.) They're thinking that my father should let her go.
This is not remotely their decision. There is a prioritized list of people who could make this decision--a power of attorney, then a spouse, then children, etc. And doctors certainly have a lot of input. But these people who have made my life miserable these last couple of days are not even on the list. And unless something unthinkable happens to my father, I don't have any legal right to make medical decisions for my mother. If I thought my father was making bad decisions (and I most certainly don't, and neither does my sister), my only recourse would be to get a lawyer. But 'these people' (as I'll refer to them) are not letting my lack of decision-making authority stop them from getting upset with me. I just don't know what to say about that. Words like 'appalled' come to mind. 'Disbelief'. Even though I didn't have any illusion about these people having warm fuzzy feelings for me (or I for them), I'm a bit stunned that people could behave this badly. I shouldn't be--I'm old enough to have been around enough people by now to know this.
No matter how old I get, I don't think my fellow human beings will ever lose the ability to astonish me.
Some days I think a literal island for Erika would be a good idea.
I had a vivid dream about an island, just a few days ago. There were people on the island, a campfire, food, music--a regular party. And I stayed away from them. A couple of them even asked me to join them, but I wouldn't. Because I knew it would be hopeless to try to join in the fun. How depressing, especially since it has such a ring of truth to it.
I had a talk with God last night. Of course, I don't know which God I talk to. But we do still talk. I told him (her? it? them?) that I don't like the way things are being run.
I don't know why I would be feeling depressed....
And tomorrow morning I'll get myself out of bed and try to have a better day. Today was a bit better than yesterday. And any time my mother is a little better, that can't help but make my day a little better, too.
Mom is in an acute long-term care facility now, and it's in a location I'm quite familiar with, in another hospital. They even have free valet parking, which is really, really nice for somebody who can't walk more than a few car lengths in the cold without having an asthma attack. And when my father asked if I knew where the elevators were, I had the perfect excuse--I'd never been through the hospital's front door before. I always go in through the emergency room.
I get a little bit better every day. I can't be outside, or exercise yet, but I'm more comfortable now--my chest isn't as tight, I don't cough as much, or breath as hard.
I had a crabby discussion after we came home from the hospital with my general practitioner's office staff. They hadn't wanted to send my medical records to the Cleveland Clinic. I'd finally talked them into it, and today (wisely, if I do say myself) I checked with the Cleveland Clinic to see if my records had been received. Guess what. They hadn't. But not only had the records not been received--my GP's office staff had never heard of such a request. And when I told them I wanted records for CVID and asthma, the response was, 'so you want the records for asthma'. They don't know what CVID is (and why on Earth would I want to go to Ohio to see a doctor whose staff may have actually heard of what's wrong with me?). They couldn't understand why I'd want to go to the Cleveland Clinic when my GP hadn't recommended it. Not that he'd been against it when I'd spoken to him after making the appointment. He's always been supportive. Otherwise his staff would have chased me away by now.
And then....
I've given some thought to posting about this on the blog. I won't be naming any names or going into a lot of detail. At least, I don't think I will. Not today, anyway.
I'm very fortunate to have the family I have. They're not perfect people, but they're about as perfect as any others I'm likely to find. And they're not abusive--not physically, and not emotionally, either. They're my favorite people. :)
However, there are other people in my life who aren't so nice. One of them is actually quite physically abusive, although I haven't been a victim. I've been threatened, intimidated, stalked, and talked about behind my back, but not assaulted. The others have contented themselves with simply treating me like dirt and refusing to speak to me. And, wouldn't you know, they picked this time to rear their ugly heads.
They don't know that I've recently given up Christianity. At least one of them would get extremely upset about it--I'd bet all the cash in my purse. I'm refraining from mentioning it. At least one knows about my friend 'dumping' me two months ago. I'm not certain they know how sick I've been this month. They do know about my mother.
These are people I've basically cut out of my life as much as possible, mostly because I've gotten used, over the years, to being in possession of what little sanity I have, and I don't have any desire to part with any more of it. Over the last couple of years I've seen them rarely, and not spoken to them by phone or email more than a half a dozen times, out of necessity. And they've chosen this week to decide that they are unhappy with me about this. Of course, it wouldn't occur to any of them to offer an olive branch of friendship--instead they've spoken to another person in my life about how I should be talking to them, and about how this situation is all my fault. They don't understand why I don't talk to them.
There's also been some dispute about my mother's medical care--whether or not her situation is hopeless, whether she should continue to have medical care or be allowed to die. (This started just before my mother started opening her eyes, which they may not even know about yet.) They're thinking that my father should let her go.
This is not remotely their decision. There is a prioritized list of people who could make this decision--a power of attorney, then a spouse, then children, etc. And doctors certainly have a lot of input. But these people who have made my life miserable these last couple of days are not even on the list. And unless something unthinkable happens to my father, I don't have any legal right to make medical decisions for my mother. If I thought my father was making bad decisions (and I most certainly don't, and neither does my sister), my only recourse would be to get a lawyer. But 'these people' (as I'll refer to them) are not letting my lack of decision-making authority stop them from getting upset with me. I just don't know what to say about that. Words like 'appalled' come to mind. 'Disbelief'. Even though I didn't have any illusion about these people having warm fuzzy feelings for me (or I for them), I'm a bit stunned that people could behave this badly. I shouldn't be--I'm old enough to have been around enough people by now to know this.
No matter how old I get, I don't think my fellow human beings will ever lose the ability to astonish me.
Some days I think a literal island for Erika would be a good idea.
I had a vivid dream about an island, just a few days ago. There were people on the island, a campfire, food, music--a regular party. And I stayed away from them. A couple of them even asked me to join them, but I wouldn't. Because I knew it would be hopeless to try to join in the fun. How depressing, especially since it has such a ring of truth to it.
I had a talk with God last night. Of course, I don't know which God I talk to. But we do still talk. I told him (her? it? them?) that I don't like the way things are being run.
I don't know why I would be feeling depressed....
And tomorrow morning I'll get myself out of bed and try to have a better day. Today was a bit better than yesterday. And any time my mother is a little better, that can't help but make my day a little better, too.
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