It has been raining all day. Not that common for Southern CA in October. I usually love the rain, as long as I do not have to drive in it.
Its yet another thing I love less now. One of my favorite things to do on rainy days is to sit at my table by the window with a cup of tea. I love to look out and watch the ducks play in the rain. But there are no ducks now. I love to watch things turn green, and our hard earth soften up. I look forward to the first Sat. I will get to go out and garden after a good rain. Not so much now. I like to make cookies on rainy days. Though I have not in a while, I still think of it on rainy days. But cookies call for eggs, and that reminds me of the duck eggs I have used for so many years. Another sad reminder.
My friend Mark died Oct. 4. He would have been 55 two days later. I saw him Sept. 19. He was not doing great, but maybe a tiny bit better than last time. Oct. 3, I got a phone call that Mark had been back in the hospital with pneumonia, but it was clearing up and they were sending him back to the nursing home. They were calling in hospice. I thought that was good, hospice would see that he was better taken care of, but that did not mean he was going to die soon, just have a terminal diagnosis, and he did have that. But I thought now that summer was over, I need to smuggle his bunny over to see him when I went on Oct 10. But then Oct 4 I get the call that he had died that afternoon. I feel bad I didn't get another visit, and really bad he did not get to say good bye to his bunny. But I had no idea it would be so soon.
When the ambulance took him from his home to the hospital 16 1/2 months earlier, he expected to be coming home again. Who knew that in such a short time, the ALS would just about completely paralyze him. The average ALS person lives 3-5 years after being diagnosed. Mark did not even get two years. He could not move much except his head by the end. It is such a horrible disease. Granted he would not have wanted to live like that for too many years. But he would have been happy to live another 6 mo. or so. He had not given up yet. One more visit (and a goodbye with the bunny), knowing it might be my last would have been helpful to me, at least. But I did not get it. The one good thing, is his sister, who lives back east, managed to be with him when he died.
He made quite an impression on people that got to know him, the grace, and courage he had in dealing with his illness. I don't think I could have handled it half as well as he did. I would have either been super depressed, or furious, but not graceful.
There was no funeral. There may be a celebration of his life later on. But for now its like he just evaporated. Yet another who disappears from my life. Happy Trails my friend. You will be missed.
Showing posts with label als. Show all posts
Showing posts with label als. Show all posts
Tuesday, October 19, 2010
Tuesday, March 2, 2010
Catch up
Its been a while. Nothing memorable to say.
Lots of little annoyances this week. Nothing big, not like the big stuff some of my friends are going through.
Up dates on their big stuff, then maybe listing my insignificant little things, will make them annoy me less.
A friend in AZ, J, is practically living at the hospital. Her 31 yr. old son was diagnosed with leukaemia Christmas week. He started Chemo Christmas day. He was supposed to get a bone marrow transplant from his brother last week, if all went well. Still waiting to hear. My friend has always been so positive, but she is just a basket case. They say has chances with the transplant are 50/50.
I tell her those are pretty good odds, but she is in such despair, I don't know if she will ever come back from this.
My friend Mark (with the ALS) continues to worsen. He had more mobility in his hands and arms a few months ago then he does now. He is still able to eat real food, which is very good. He was on pureed food for a while, when he had some trouble swallowing. He thought the food was bad before....but after that, he was thrilled to get it back. I think he may have gained a few of the pounds he lost back, looks a little less frail.
But his voice is almost gone. I don't know what part is going. Is it the tongue and lips, or vocal cords, or what, but it became almost impossible to understand him. Last month he finally got a talking machine. Not sure the technical term....its like what Stephen Hawking uses. He is able to use a sensor to make a cursor spell out what he wants to say, then he can hit a button that says Speak, and it speaks it. Its pretty cool. It takes a lot of work for him, but at least he is able to communicate again. It was looking like he would not get it until his Medi-Cal kicked in. (they are $10,000!!) Its on loan, but he desperately needs it. Imagine having a fully functional mind and no way to communicate.
His Medi-cal has not kicked in yet. He has been in the nursing home almost 8 months. Pretty sure insurance is not covering it now.
His sister is handling all his stuff. She is out of state, but comes out fairly often to get stuff done. I told her she needs to walk the Medi-Cal application in to the office, mail-ins take much longer. But it was mailed and received in Dec. It is unlikely to be looked at for several more months.
Then his house rabbit. I was going to take it if he could not go home again, and it is looking like he will not be able to live at home again. Live in help would have to be hired, and it does not look to me like his sister plans to do this. He can't do it. I can't do it. A friend has been coming over to take care of his rabbit, but other wise is home alone. Its great he has the run of the house, but he is probably getting lonely. I discussed with Mark, he would probably have to spend some time in my outdoor hutch while I got him and my house bunnies used to each other, but hopefully he would eventually be living in doors. He hated to see that, but thought it was probably the best alternative. The sister is now saying, well Mark does not want him outside, he is going to go to some vet place who will him find a home. Yeah, how long will that take? My girls were at the shelter a year before I adopted them, and can they be sure they will go someplace at least as good as here? For all I know the vet could sell them for snake food, or animal experiments. We will never know. No updates for Mark. It bothers me and I am worried about the bunny, plus I felt like I was just dismissed.
Then my massage person dismissed me yesterday. I had been going for years. The really good one I had close by for years, was stopping to get another type of job, and I knew this person, M, from something else. I think I had been paying L. about $45. and went every 3 months. Well when she quit I asked M. what she charged. I think she said $70. That's a lot for me. But I didn't want to totally stop, and since I knew her, figured maybe twice a year I could come up with that, so made my appt. After I go to write my check, and she says $30. is fine. I say "thanks, but I can't do that if you charge $70". She says its fine, she knows I can't afford that. So I go every 2-3 months, paying $30. for several years. She never says anymore. When I started making more I started writing my checks for $35. Lately I had thought maybe I should bump it up a little more, but had not done it. I go Sunday and I am 15 min. late. I just lost track of time, thought I could still make it, and raced there. I can't remember the last time I was even 5 min. late there. I apologize, she says its ok, but it will have to be just 45 min, not 60. I say I understand. After I pay, and make an appt. for 2 1/2 months.
The next day I get an e-mail saying basically, sorry, but with the bad economy I can't afford to give you reduced rates anymore, you might want to look for some place you can afford better. Dismissed again. I would have been fine, if when I gave her the check she would have told me then, $70. next time. I probably would have said fine, see you in 6 months, and started saving my pennies. But instead I was just dismissed, after all these years. I kinda felt like we were kinda friends. It felt bad. Like I did something wrong. Other than the one time 15 min. late, I can't guess what I did.
My utilities keep going up and up. I am not a phone person, hardly ever use it, but I guess I have to have one. I think the number of calls I make each month divided into my bill by the time they get all the tax and fees on is coming out to average at least $1.00 a call.!!! I called 411 last month. First in a long time. They didn't even have the number I was looking for. The last I heard, you could call 3 times a month before they charged you for calling. Nope. That one useless call was $1.50. When did that change?
All my hanging out friends are unavailable. Everyone is so far, and or so busy with jobs, significant others, kids, or just way too tired, etc. Its not even worth the trouble to try and get together more than once a year of so. Yeah, I guess I do still have some friends, but it sure does not seem like it most of the time. I go everywhere alone. Which is fine 98% of the time. But I hate telling other people I did this alone or that alone. It sounds too pathetic. And there are times when just chatting about stupid stuff like today's blog with a real live person would be nice. Or the occasional dinner or something without weeks of trying to arrange time to get together.
I have nothing in common with most of the people at work. Last job I did. One before that I did, but not here. Its all pretty much being quiet, or boring small talk. Why yes, I am single, and that's fine. I am not the kind of person that thinks any relationship is better than none. 99% of the time, its just more trouble than I want. But....one of my favorite lines about not having a relationship is "Then who do you tell your stories to?"
Then throw in some difficulties I have had lately doing stuff online or the computer in general. Some are just me, eventually I would figure it out. Its just frustrating. Others are the site/system problems, I have to wait for them to fix.
What else. Rain...I love rain, don't get me wrong. And we need it desperately here in S. CA. But...I have been working on some out door projects for several months. A big hunk of it was moving a lot of plants around my back yard. Of course everything always takes me longer than I expect it to. The other part is the rain. We went at least 6 months with no rain. When it came I was thrilled. But for the last 6 weeks or so we have averaged 2 days a week of rain. Except for 1 weekend in the past 6 or so, either it was too wet and rainy or too muddy to do anything out back!!! What are the odds of those 2 days having to always be on the weekend? I have plants I dug up weeks ago, and can't get replanted. There isn't time after work. At first it was like, oh, well I will do it next weekend. But no, it rained. This weekend? Another storm is expected. I could finish in a day and a half. Please, just one good weekend to garden. This is sunny California.
I think that's the bulk of it, must go eat and shower before Lost comes on. How will I survive it going away permanently?
Lots of little annoyances this week. Nothing big, not like the big stuff some of my friends are going through.
Up dates on their big stuff, then maybe listing my insignificant little things, will make them annoy me less.
A friend in AZ, J, is practically living at the hospital. Her 31 yr. old son was diagnosed with leukaemia Christmas week. He started Chemo Christmas day. He was supposed to get a bone marrow transplant from his brother last week, if all went well. Still waiting to hear. My friend has always been so positive, but she is just a basket case. They say has chances with the transplant are 50/50.
I tell her those are pretty good odds, but she is in such despair, I don't know if she will ever come back from this.
My friend Mark (with the ALS) continues to worsen. He had more mobility in his hands and arms a few months ago then he does now. He is still able to eat real food, which is very good. He was on pureed food for a while, when he had some trouble swallowing. He thought the food was bad before....but after that, he was thrilled to get it back. I think he may have gained a few of the pounds he lost back, looks a little less frail.
But his voice is almost gone. I don't know what part is going. Is it the tongue and lips, or vocal cords, or what, but it became almost impossible to understand him. Last month he finally got a talking machine. Not sure the technical term....its like what Stephen Hawking uses. He is able to use a sensor to make a cursor spell out what he wants to say, then he can hit a button that says Speak, and it speaks it. Its pretty cool. It takes a lot of work for him, but at least he is able to communicate again. It was looking like he would not get it until his Medi-Cal kicked in. (they are $10,000!!) Its on loan, but he desperately needs it. Imagine having a fully functional mind and no way to communicate.
His Medi-cal has not kicked in yet. He has been in the nursing home almost 8 months. Pretty sure insurance is not covering it now.
His sister is handling all his stuff. She is out of state, but comes out fairly often to get stuff done. I told her she needs to walk the Medi-Cal application in to the office, mail-ins take much longer. But it was mailed and received in Dec. It is unlikely to be looked at for several more months.
Then his house rabbit. I was going to take it if he could not go home again, and it is looking like he will not be able to live at home again. Live in help would have to be hired, and it does not look to me like his sister plans to do this. He can't do it. I can't do it. A friend has been coming over to take care of his rabbit, but other wise is home alone. Its great he has the run of the house, but he is probably getting lonely. I discussed with Mark, he would probably have to spend some time in my outdoor hutch while I got him and my house bunnies used to each other, but hopefully he would eventually be living in doors. He hated to see that, but thought it was probably the best alternative. The sister is now saying, well Mark does not want him outside, he is going to go to some vet place who will him find a home. Yeah, how long will that take? My girls were at the shelter a year before I adopted them, and can they be sure they will go someplace at least as good as here? For all I know the vet could sell them for snake food, or animal experiments. We will never know. No updates for Mark. It bothers me and I am worried about the bunny, plus I felt like I was just dismissed.
Then my massage person dismissed me yesterday. I had been going for years. The really good one I had close by for years, was stopping to get another type of job, and I knew this person, M, from something else. I think I had been paying L. about $45. and went every 3 months. Well when she quit I asked M. what she charged. I think she said $70. That's a lot for me. But I didn't want to totally stop, and since I knew her, figured maybe twice a year I could come up with that, so made my appt. After I go to write my check, and she says $30. is fine. I say "thanks, but I can't do that if you charge $70". She says its fine, she knows I can't afford that. So I go every 2-3 months, paying $30. for several years. She never says anymore. When I started making more I started writing my checks for $35. Lately I had thought maybe I should bump it up a little more, but had not done it. I go Sunday and I am 15 min. late. I just lost track of time, thought I could still make it, and raced there. I can't remember the last time I was even 5 min. late there. I apologize, she says its ok, but it will have to be just 45 min, not 60. I say I understand. After I pay, and make an appt. for 2 1/2 months.
The next day I get an e-mail saying basically, sorry, but with the bad economy I can't afford to give you reduced rates anymore, you might want to look for some place you can afford better. Dismissed again. I would have been fine, if when I gave her the check she would have told me then, $70. next time. I probably would have said fine, see you in 6 months, and started saving my pennies. But instead I was just dismissed, after all these years. I kinda felt like we were kinda friends. It felt bad. Like I did something wrong. Other than the one time 15 min. late, I can't guess what I did.
My utilities keep going up and up. I am not a phone person, hardly ever use it, but I guess I have to have one. I think the number of calls I make each month divided into my bill by the time they get all the tax and fees on is coming out to average at least $1.00 a call.!!! I called 411 last month. First in a long time. They didn't even have the number I was looking for. The last I heard, you could call 3 times a month before they charged you for calling. Nope. That one useless call was $1.50. When did that change?
All my hanging out friends are unavailable. Everyone is so far, and or so busy with jobs, significant others, kids, or just way too tired, etc. Its not even worth the trouble to try and get together more than once a year of so. Yeah, I guess I do still have some friends, but it sure does not seem like it most of the time. I go everywhere alone. Which is fine 98% of the time. But I hate telling other people I did this alone or that alone. It sounds too pathetic. And there are times when just chatting about stupid stuff like today's blog with a real live person would be nice. Or the occasional dinner or something without weeks of trying to arrange time to get together.
I have nothing in common with most of the people at work. Last job I did. One before that I did, but not here. Its all pretty much being quiet, or boring small talk. Why yes, I am single, and that's fine. I am not the kind of person that thinks any relationship is better than none. 99% of the time, its just more trouble than I want. But....one of my favorite lines about not having a relationship is "Then who do you tell your stories to?"
Then throw in some difficulties I have had lately doing stuff online or the computer in general. Some are just me, eventually I would figure it out. Its just frustrating. Others are the site/system problems, I have to wait for them to fix.
What else. Rain...I love rain, don't get me wrong. And we need it desperately here in S. CA. But...I have been working on some out door projects for several months. A big hunk of it was moving a lot of plants around my back yard. Of course everything always takes me longer than I expect it to. The other part is the rain. We went at least 6 months with no rain. When it came I was thrilled. But for the last 6 weeks or so we have averaged 2 days a week of rain. Except for 1 weekend in the past 6 or so, either it was too wet and rainy or too muddy to do anything out back!!! What are the odds of those 2 days having to always be on the weekend? I have plants I dug up weeks ago, and can't get replanted. There isn't time after work. At first it was like, oh, well I will do it next weekend. But no, it rained. This weekend? Another storm is expected. I could finish in a day and a half. Please, just one good weekend to garden. This is sunny California.
I think that's the bulk of it, must go eat and shower before Lost comes on. How will I survive it going away permanently?
Sunday, August 23, 2009
Work, Mark, Vito and Sawdust
Its been a while. I guess if I wait until I have something important to say I may never post.
Whats been on my mind?
Work has been pretty bad lately. I work for the county in Social Services. Mostly I work in the back with computers, and mail. I am busy, but little direct client contact, and I like it that way. But lately management has been royally screwing over the section of clients that I process. Their way of getting caught up on the back log of applications we can't keep up with is to send letters to the people telling them they are denied. Their thinking is if they still really want it, they will call or come in right away, then we will look at their application. If they call or come in in a couple weeks, they have to start all over in the application process. I am so pissed! I have complained like crazy to my co-workers and bosses, but apparently don't have the guts to take it high enough. That pisses me off too. I am quite disappointed in myself. I am usually not too afraid of stuff...besides needles, dentists, relationships, that kind of stuff. But in this economy....I need the job too much. Yeah, its probably not life and death, but definitely not right. I may not always have that much sympathy for all of the clients, but I do have a strong sense of fairness, and this is not fair.
I went to the Sawdust festival recently. Its a summer thing in Laguna Beach. Very cool arts stuff. I love to look at stuff I could never do. I also get inspiration for the few things I could do if I worked on them. There is some music and the food is pretty good. Parking is tough. Take no chances! If you think you will be safe for 5 minutes, DO NOT COUNT ON IT!, the parking Nazi's will get you.
I so appreciate art talent. There is a ritzier art thing close by. Laguna has tons of art, and artists, but I am mostly at Sawdust. One more week for this summer.
I finally went to see my friend Mark. He was in the hospital almost 2 months, and is now is a nursing home. He is hoping to be able to go home again with a lot of help. He has had ALS for about a year now. We will see. I had not seen Mark in I am guessing about 7 years. We are both older now. First I had to find him.
He was not in the hospital any more and they wouldn't tell me where he went. Call nursing home I think he was going to, they will tell me nothing. Finally see an e-mail from his sister telling me where he was going. The street zig zagged in a way that I did not realize when I saw the map, so I missed the second part of it at first.
Get there, he is not in his room, and have to pick him out from all the people in the dining room, while trying not to embarrass either of us. Right now he is very hard to understand, but he is as sharp as ever. I find him (great view from the nearby window), ask how it was there. It took me a few trys to figure out what he was saying. He said "he felt like Jack Nicholson in One Flew Over the Cuckoos Nest...ask where Nurse Ratchet is...he says there are several. It made me laugh. He may look different, and not be able to do much, but it is still Mark.
Talking to Mark is a bit like playing charades. Sounds like.... He is hoping when they get his medication right, he will be able to talk better. He is pretty bored. He is only 53. He is in a wheel chair. The first time I went he did not even have a remote control for the t.v.!
I take him some books on cd and music cds from the library to try and pass the time, keep his brain occupied. Its not enough, but its something. His sister is back east, dad is 75 miles north, and old. I keep thinking. "damm, it could be me".
My oldest duck, Vito, died last week. I believe it was natural causes. I had him 17 years, since he was an egg. He was the first to hatch here. I buried him in my yard along with way too many others. They are pets, and I miss him.
That's about it.
Whats been on my mind?
Work has been pretty bad lately. I work for the county in Social Services. Mostly I work in the back with computers, and mail. I am busy, but little direct client contact, and I like it that way. But lately management has been royally screwing over the section of clients that I process. Their way of getting caught up on the back log of applications we can't keep up with is to send letters to the people telling them they are denied. Their thinking is if they still really want it, they will call or come in right away, then we will look at their application. If they call or come in in a couple weeks, they have to start all over in the application process. I am so pissed! I have complained like crazy to my co-workers and bosses, but apparently don't have the guts to take it high enough. That pisses me off too. I am quite disappointed in myself. I am usually not too afraid of stuff...besides needles, dentists, relationships, that kind of stuff. But in this economy....I need the job too much. Yeah, its probably not life and death, but definitely not right. I may not always have that much sympathy for all of the clients, but I do have a strong sense of fairness, and this is not fair.
I went to the Sawdust festival recently. Its a summer thing in Laguna Beach. Very cool arts stuff. I love to look at stuff I could never do. I also get inspiration for the few things I could do if I worked on them. There is some music and the food is pretty good. Parking is tough. Take no chances! If you think you will be safe for 5 minutes, DO NOT COUNT ON IT!, the parking Nazi's will get you.
I so appreciate art talent. There is a ritzier art thing close by. Laguna has tons of art, and artists, but I am mostly at Sawdust. One more week for this summer.
I finally went to see my friend Mark. He was in the hospital almost 2 months, and is now is a nursing home. He is hoping to be able to go home again with a lot of help. He has had ALS for about a year now. We will see. I had not seen Mark in I am guessing about 7 years. We are both older now. First I had to find him.
He was not in the hospital any more and they wouldn't tell me where he went. Call nursing home I think he was going to, they will tell me nothing. Finally see an e-mail from his sister telling me where he was going. The street zig zagged in a way that I did not realize when I saw the map, so I missed the second part of it at first.
Get there, he is not in his room, and have to pick him out from all the people in the dining room, while trying not to embarrass either of us. Right now he is very hard to understand, but he is as sharp as ever. I find him (great view from the nearby window), ask how it was there. It took me a few trys to figure out what he was saying. He said "he felt like Jack Nicholson in One Flew Over the Cuckoos Nest...ask where Nurse Ratchet is...he says there are several. It made me laugh. He may look different, and not be able to do much, but it is still Mark.
Talking to Mark is a bit like playing charades. Sounds like.... He is hoping when they get his medication right, he will be able to talk better. He is pretty bored. He is only 53. He is in a wheel chair. The first time I went he did not even have a remote control for the t.v.!
I take him some books on cd and music cds from the library to try and pass the time, keep his brain occupied. Its not enough, but its something. His sister is back east, dad is 75 miles north, and old. I keep thinking. "damm, it could be me".
My oldest duck, Vito, died last week. I believe it was natural causes. I had him 17 years, since he was an egg. He was the first to hatch here. I buried him in my yard along with way too many others. They are pets, and I miss him.
That's about it.
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