Today has been another good day--the sun has even come out! Yesterday Marty suggested an outing this weekend to New Bedford for Summerfest, a folk music and crafts festival (http://www.newbedfordsummerfest.com/contact.htm), and today we made the arrangements. We have a hotel reservation for Friday and Saturday nights, in an all-suite hotel, and we can spend the day on both Saturday and Sunday wandering around among four stages featuring folk and traditional music, looking at crafts (and maybe even buying some) as well as seeing the sights of this historic town. Marty, who's been to this festival before, says there's a famous seafood restaurant that sets up a big tent where they serve fried clams (yum!), fish and chips, and the like. I just hope the weather cooperates--the forecast is good, but according to the weather forcast this yucky weather was supposed to have ended a week ago.
Again today I fell asleep after lunch, sitting in my lounge chair, and late in the afternoon I felt strong enough to take a shower. My knees have been hurting just slightly, and when Katrina was here she said that the hospice doctor thinks we should see how I do on morphine (possibly the long-acting type) before considering anything more drastic.
Somewhat mysteriously, I got a letter from Social Security yesterday saying "Welcome to Medicare." When I was put onto Social Security Disability in December of 2007, I got five months of retroactive payments, and I was never sure what that meant in terms of the two year waiting period between getting disability and Medicare. I have called Social Security several times and was told that, based on the December 2007 date, Medicare would start in December of 2009, except that, since I turn sixty-five in October of '09, Medicare would start then. However, my cousin who works for Social Security was sure that the two year countdown started from the date that the retroactive payments started, and it appears that he was right. According to the letter, I'm supposed to go to a certain Website to register, but I don't yet have the Medicare card referred to in the letter; it didn't come in today's mail, so I'm hoping it does tomorrow. I also need to find out information about supplemental insurance and the drug benefit, so I'm going to need to make some phone calls, since the whole system has been made very deliberately confusing.
Also, a few days ago I called Bill Anthony at Boston University, to ask if they could help find a location to hold my "celebration," and yesterday I got an e-mail from Joan, who sets up conferences and meetings, saying she had gotten use of a ballroom at the student union building, at no charge, on August 20th in the afternoon. The next step is to talk to the catering manager, which I will do tomorrow. I know the catering will be expensive, but I've been to a number of events at B.U. and the food is always really good. Last night I wrote some proposed text for the invitation, which Julie and Marty have made some modifications to, Marty has laid it out beautifully, and now I just have to put a list together so we can start e-mailing them. I'm excited that this is really going to happen.
Tuesday, June 30, 2009
A drowsy day
After Laurel gave me my lunch early this afternoon, she wondered whether I'd ever fallen asleep in my comfortable chair. I told her that I hadn't, so far, then drifted off into a pleasant sleep and when I woke up she was gone.
Earlier, I'd had several visitors, starting with Lauren, whom I talked to about my knees. They're hardly hurting at all today, but I reviewed the history with her and told her about the successful treatment I'd had. I told her I'd keep her posted by phone, and she said she'd talk with the hospice doctor about it at the weekly staff conference on Tuesday.
Laurel arrived and did some straightening up, and then Tim, my volunteer came for his weekly visit. After he left I had lunch, and then drifted into a light sleep until Barbara arrived to give me one of her Reiki-like treatments. Like Lisa, she finds that she can work quite well with me relaxing in my chair in the fully reclined position.
I took another nap in the early evening, after moving back into the bedroom, and now it's midnight and I'm ready to go to sleep for real. I'm pleasantly tired, rather than that awful, utterly wiped feeling, and am hoping for a good night's sleep.
Earlier, I'd had several visitors, starting with Lauren, whom I talked to about my knees. They're hardly hurting at all today, but I reviewed the history with her and told her about the successful treatment I'd had. I told her I'd keep her posted by phone, and she said she'd talk with the hospice doctor about it at the weekly staff conference on Tuesday.
Laurel arrived and did some straightening up, and then Tim, my volunteer came for his weekly visit. After he left I had lunch, and then drifted into a light sleep until Barbara arrived to give me one of her Reiki-like treatments. Like Lisa, she finds that she can work quite well with me relaxing in my chair in the fully reclined position.
I took another nap in the early evening, after moving back into the bedroom, and now it's midnight and I'm ready to go to sleep for real. I'm pleasantly tired, rather than that awful, utterly wiped feeling, and am hoping for a good night's sleep.
Sunday, June 28, 2009
Our outing
We're still having the same cool, overcast weather with no end in sight. Our day got off to a slow start--I was feeling somewhat wiped out from the early morning dose of morphine, but at least my knees weren't hurting. Our aim was to get out of the house by about eleven thirty, to get to Sears when the optical department opened, but we actually left a little earlier, figuring we could walk around the mall a bit first. Marty put the new portable concentrator in the car and got it hooked up, and it seems to be working all right. We actually turned out to give it a little more of a test than intended, as when Marty left the car in the parking lot he unplugged the power cord, so it ran on batteries while we were in the mall, and when he got back to the car it was still running, but was beeping, indicating that it was just about out of charge, and on the way home it recharged itself the way it's supposed to, so I hope we have that problem solved.
Marty got the scooter set up and we wandered around the mall for a short time, then went into Sears. We had to wait about ten minutes, but once it was my turn, the guy got my glasses fixed really quickly. They have been so bent that I basically couldn't see out of them--they're no-line bifocals, bent so badly that I was looking through the wrong part of the lens all the time. When I got these glasses, I had left my old pair, which needed some kind of repair (I can't even remember what), but it was so long ago I was sure they had been thrown out; to my surprise, the guy found them, so now I have a decent back-up pair as well.
Legal Sea Foods was at the same side of the mall, so we went there next and had a lovely lunch. When I first moved to the Boston area, Legal had one restaurant, not at all fancy, in Cambridge; over the years, they have expanded to a small upscale chain with a number of restaurants in the Boston area, as well as Washington, D.C. and a few other places (http://www.legalseafoods.com/index.cfm/page/Home). Marty had one of his favorite fish, halibut, and I had softshell crabs, which I love, and we split a Caesar salad. I also had some of their famous clam chowder, and we shared two chocolate desserts--a very rich layer cake (most of which we took home) and a warm chocolate fudge cake, both served with vanilla ice cream. Although I've basically lost my taste for coffee in the last couple of years, I also had a decaf cappucino--I can't remember the last time I had one, and I really enjoyed it.
When we finished eating, my knees were starting to ache again. At first, I took a half syringe of morphine, but after discussing it with Marty, decided to take another half (since the full syringe I'd taken earlier had successfully gotten on top of the pain). I've taken one more full syringe, about eight o'clock, which I hope will get me through the night. I will definitely discuss this all with Lauren tomorrow.
After lunch, I wanted to go to Macy's, which was at the opposite end of the mall, so I suggested to Marty that I go there in the scooter while he moved the car (so he wouldn't have to go to all the effort of taking the scooter apart and putting it together again). I wanted to see if I could find a few simple summer blouses (I have so few clothes that fit me, because of the weight I've gained), but I didn't find much, and wasn't in a shopping mood, so after a short while we headed home.
We've been relaxing the rest of the day, including doing all of this Sunday's puzzle--I'm not sure when we'll get back to last Sunday's--and watching TV. I got very tired a couple of times when we were out and getting back into the house, but I feel pretty good right now.
Marty got the scooter set up and we wandered around the mall for a short time, then went into Sears. We had to wait about ten minutes, but once it was my turn, the guy got my glasses fixed really quickly. They have been so bent that I basically couldn't see out of them--they're no-line bifocals, bent so badly that I was looking through the wrong part of the lens all the time. When I got these glasses, I had left my old pair, which needed some kind of repair (I can't even remember what), but it was so long ago I was sure they had been thrown out; to my surprise, the guy found them, so now I have a decent back-up pair as well.
Legal Sea Foods was at the same side of the mall, so we went there next and had a lovely lunch. When I first moved to the Boston area, Legal had one restaurant, not at all fancy, in Cambridge; over the years, they have expanded to a small upscale chain with a number of restaurants in the Boston area, as well as Washington, D.C. and a few other places (http://www.legalseafoods.com/index.cfm/page/Home). Marty had one of his favorite fish, halibut, and I had softshell crabs, which I love, and we split a Caesar salad. I also had some of their famous clam chowder, and we shared two chocolate desserts--a very rich layer cake (most of which we took home) and a warm chocolate fudge cake, both served with vanilla ice cream. Although I've basically lost my taste for coffee in the last couple of years, I also had a decaf cappucino--I can't remember the last time I had one, and I really enjoyed it.
When we finished eating, my knees were starting to ache again. At first, I took a half syringe of morphine, but after discussing it with Marty, decided to take another half (since the full syringe I'd taken earlier had successfully gotten on top of the pain). I've taken one more full syringe, about eight o'clock, which I hope will get me through the night. I will definitely discuss this all with Lauren tomorrow.
After lunch, I wanted to go to Macy's, which was at the opposite end of the mall, so I suggested to Marty that I go there in the scooter while he moved the car (so he wouldn't have to go to all the effort of taking the scooter apart and putting it together again). I wanted to see if I could find a few simple summer blouses (I have so few clothes that fit me, because of the weight I've gained), but I didn't find much, and wasn't in a shopping mood, so after a short while we headed home.
We've been relaxing the rest of the day, including doing all of this Sunday's puzzle--I'm not sure when we'll get back to last Sunday's--and watching TV. I got very tired a couple of times when we were out and getting back into the house, but I feel pretty good right now.
A nice day
"Nice" is a significant word in my special vocabulary. There's a whole category of movies, for example, that I classify as "nice" movies, translated, perhaps, as "feel good" movies done well, as opposed to mindless tearjerkers. A "nice" movie is one that makes you think that maybe the human race is redeemable after all. The mindless tearjerkers, on the other hand, I classify as "sincere" movies, so when I call something "nice" it's definitely a good thing; when I call it "sincere," you're supposed to hear the irony underneath. (Nonetheless, a sincere movie can make me cry real tears at the same time that I realize how shamelessly the filmmaker is manipulating my emotions!)
I refuse to buy sympathy cards where the text is "With sincere sympathy"--like there was some other kind! In fact, I usually just take a very pretty floral notecard and write some words of my own, which I think is a lot more meaningful.
All this has been a lead-in to what a nice day yesterday was. In the morning, before Sears opened, Marty figured out how to find out whether optical department was open on Sunday (the information wasn't on their Website, and the phone number got you into an automated system that didn't have the information either), as Donna needed his help (she was off on Saturday but working on Sunday). Once he ascertained that they were open (starting at noon), and that I could get someone to stay with me (Judy, who is often available and apologetic when she isn't--I always tell her not to apologize), he left, after giving me my breakfast and getting me set up in the living room. I was quite comfortable, even before Judy arrived--I had newspapers to read, and put on NPR to listen to the car guys, who always crack me up. Judy arrived just as "Wait, Wait, Don't Tell Me" was starting--she was happy that I was listening to it, since she had been listening in the car on the way over, so we listened and laughed together. Last week was a great day for "Wait, Wait" material--the governor "hiking the Appalachian trail" will provide comedic fodder for a long time!
I'd had a light breakfast (biscuits again--Marty stocked up when he was at Popeye's, and they seem to keep pretty well) and was hungry, so Judy heated up the rest of the chicken pie from the other day, and cooked some carrots, and I devoured it. There wasn't much to watch on TV (the news stations have become Michael Jackson all the time), so we talked some, and I read some. The sun was trying to come out, and Judy said that in fact it was rather hot and muggy out, but I was comfortable with just the fan going (if it does get too hot, I can rely on the very powerful air conditioner in there that cools off the whole living room/dining room area very quickly).
My friend Dan called, and said that it was a good time for him to stop by, and that he was going to bring another friend, Ken (who is someone Marty and I both knew separately through work things, as Ken is involved both in anti-psychiatry stuff and in Israel/Palestine peace issues), so Judy said she'd just clean up stuff in the kitchen and leave once they arrived, as Marty had called and it sounded like he'd be home in a few hours, which she did once they arrived and we did a round of introductions. We then spent an enjoyable two hours or so talking about all kinds of stuff. I was feeling good--the pain had gone back to one small spot and is just annoying rather than being seriously draining, and sitting in the lounge chair relaxes my whole body. Lisa showed me a very easy stretch when she gave me my massage on Thursday, where I put my arms over my head and lightly hold the back rail of the chair, so I did that several times, which felt really good and put just the right amount of pull on the sore muscle, which is what everyone has concluded it is.
Marty got home not long after they left. In the morning, we had realized that we'd never even looked at last Sunday's crossword puzzle, so we started on that, but then got involved in watching one of our favorite movies, North by Northwest, on TCM, which was doing a Hitchcock day, and which shows movies without commercials. We both know the whole movie, even chunks of dialogue, but it's still fun to watch because it's so well-constructed and stylish. As a result, we never did get far on the puzzle, and we'll have a new one with today's paper, so we'll need to find some serious crossword puzzle time this week!
I'm not sure if I've written anything about the war that's broken out between my cats, who are usually best buddies, but for the last week they have been hissing and growling at each other, with Gilbert, the smaller, younger, and usually more submissive cat definitely the instigator! A few times he's chased Oliver under the bed when Marty is trying to give them their breakfast, or the cat treats they get in the evening, and since Oliver's medicine goes along with meals, it's made it hard on Marty, who has had to lure him out to make sure the medicine got into the right cat! I called the vet the other day, and while I never spoke with her directly, got a message relayed that perhaps Oliver's thyroid is out of whack and Gilbert could be smelling some indication of that, so Marty now has an appointment to bring him in on Monday morning, although our regular vet (who adores Oliver) will be on vacation and he'll be seeing a substitute. I guess they will do some blood work and possibly adjust his medication--at least, I'm hoping it's that simple. I'm very attached to both cats (who are both very loving, and adore being petted and tickled) and get very anxious even thinking about anything bad happening to them. Oliver is fourteen, which is getting up there for a cat.
As I expected after my huge lunch, I didn't get super hungry for dinner, and asked Marty to heat up the the one leftover slice of pizza from a few nights ago, which I had with a beer. We watched some TV (I was doing more reading than watching), and ate some watermelon which Marty cut up into chunks and eventually moved back into the bedroom, intending to do some more work on the crossword puzzle, but I fell asleep on top of the covers almost immediately and slept for close to an hour, and then after a bit went to sleep for real. I guess I'd been sleeping for a bit more than an hour when some music worked its way into my dream, and I woke in a state of confusion. Marty, who had also been sleeping, had come awake because he wanted to watch Rear Window, so we both watched for awhile, and had some ice cream, but neither of us could stay awake, so it's a good thing we both know the movie pretty well or we'd be wondering how it ended.
Unfortunately, I was awakened later in the night with a really bad aching in both knees, and early this morning I took some morphine, which seems to have it under control, but I'm getting quite worried my knee and hip pain may be coming back. It's been just about two years (it was mid-July) since I had the radio-frequency ablation procedure that put an end to more than two years of miserable, nagging pain; at the pain clinic they told me the effects of the procedure would last a maximum of eighteen months, so I've certainly had a good run. They told me they could repeat the procedure when the pain came back (which they said would happen eventually), so if this continues I will certainly give the pain clinic a call. The last thing I need right now is to deal with really bad pain! Right now, with the morphine, it's under control, so our plan for the day is to go to Sears, and possibly stroll around the mall, and have lunch at Legal Seafoods. I'll have morphine with me so I should be all right in terms of pain control.
Here's hoping for another nice day!
I refuse to buy sympathy cards where the text is "With sincere sympathy"--like there was some other kind! In fact, I usually just take a very pretty floral notecard and write some words of my own, which I think is a lot more meaningful.
All this has been a lead-in to what a nice day yesterday was. In the morning, before Sears opened, Marty figured out how to find out whether optical department was open on Sunday (the information wasn't on their Website, and the phone number got you into an automated system that didn't have the information either), as Donna needed his help (she was off on Saturday but working on Sunday). Once he ascertained that they were open (starting at noon), and that I could get someone to stay with me (Judy, who is often available and apologetic when she isn't--I always tell her not to apologize), he left, after giving me my breakfast and getting me set up in the living room. I was quite comfortable, even before Judy arrived--I had newspapers to read, and put on NPR to listen to the car guys, who always crack me up. Judy arrived just as "Wait, Wait, Don't Tell Me" was starting--she was happy that I was listening to it, since she had been listening in the car on the way over, so we listened and laughed together. Last week was a great day for "Wait, Wait" material--the governor "hiking the Appalachian trail" will provide comedic fodder for a long time!
I'd had a light breakfast (biscuits again--Marty stocked up when he was at Popeye's, and they seem to keep pretty well) and was hungry, so Judy heated up the rest of the chicken pie from the other day, and cooked some carrots, and I devoured it. There wasn't much to watch on TV (the news stations have become Michael Jackson all the time), so we talked some, and I read some. The sun was trying to come out, and Judy said that in fact it was rather hot and muggy out, but I was comfortable with just the fan going (if it does get too hot, I can rely on the very powerful air conditioner in there that cools off the whole living room/dining room area very quickly).
My friend Dan called, and said that it was a good time for him to stop by, and that he was going to bring another friend, Ken (who is someone Marty and I both knew separately through work things, as Ken is involved both in anti-psychiatry stuff and in Israel/Palestine peace issues), so Judy said she'd just clean up stuff in the kitchen and leave once they arrived, as Marty had called and it sounded like he'd be home in a few hours, which she did once they arrived and we did a round of introductions. We then spent an enjoyable two hours or so talking about all kinds of stuff. I was feeling good--the pain had gone back to one small spot and is just annoying rather than being seriously draining, and sitting in the lounge chair relaxes my whole body. Lisa showed me a very easy stretch when she gave me my massage on Thursday, where I put my arms over my head and lightly hold the back rail of the chair, so I did that several times, which felt really good and put just the right amount of pull on the sore muscle, which is what everyone has concluded it is.
Marty got home not long after they left. In the morning, we had realized that we'd never even looked at last Sunday's crossword puzzle, so we started on that, but then got involved in watching one of our favorite movies, North by Northwest, on TCM, which was doing a Hitchcock day, and which shows movies without commercials. We both know the whole movie, even chunks of dialogue, but it's still fun to watch because it's so well-constructed and stylish. As a result, we never did get far on the puzzle, and we'll have a new one with today's paper, so we'll need to find some serious crossword puzzle time this week!
I'm not sure if I've written anything about the war that's broken out between my cats, who are usually best buddies, but for the last week they have been hissing and growling at each other, with Gilbert, the smaller, younger, and usually more submissive cat definitely the instigator! A few times he's chased Oliver under the bed when Marty is trying to give them their breakfast, or the cat treats they get in the evening, and since Oliver's medicine goes along with meals, it's made it hard on Marty, who has had to lure him out to make sure the medicine got into the right cat! I called the vet the other day, and while I never spoke with her directly, got a message relayed that perhaps Oliver's thyroid is out of whack and Gilbert could be smelling some indication of that, so Marty now has an appointment to bring him in on Monday morning, although our regular vet (who adores Oliver) will be on vacation and he'll be seeing a substitute. I guess they will do some blood work and possibly adjust his medication--at least, I'm hoping it's that simple. I'm very attached to both cats (who are both very loving, and adore being petted and tickled) and get very anxious even thinking about anything bad happening to them. Oliver is fourteen, which is getting up there for a cat.
As I expected after my huge lunch, I didn't get super hungry for dinner, and asked Marty to heat up the the one leftover slice of pizza from a few nights ago, which I had with a beer. We watched some TV (I was doing more reading than watching), and ate some watermelon which Marty cut up into chunks and eventually moved back into the bedroom, intending to do some more work on the crossword puzzle, but I fell asleep on top of the covers almost immediately and slept for close to an hour, and then after a bit went to sleep for real. I guess I'd been sleeping for a bit more than an hour when some music worked its way into my dream, and I woke in a state of confusion. Marty, who had also been sleeping, had come awake because he wanted to watch Rear Window, so we both watched for awhile, and had some ice cream, but neither of us could stay awake, so it's a good thing we both know the movie pretty well or we'd be wondering how it ended.
Unfortunately, I was awakened later in the night with a really bad aching in both knees, and early this morning I took some morphine, which seems to have it under control, but I'm getting quite worried my knee and hip pain may be coming back. It's been just about two years (it was mid-July) since I had the radio-frequency ablation procedure that put an end to more than two years of miserable, nagging pain; at the pain clinic they told me the effects of the procedure would last a maximum of eighteen months, so I've certainly had a good run. They told me they could repeat the procedure when the pain came back (which they said would happen eventually), so if this continues I will certainly give the pain clinic a call. The last thing I need right now is to deal with really bad pain! Right now, with the morphine, it's under control, so our plan for the day is to go to Sears, and possibly stroll around the mall, and have lunch at Legal Seafoods. I'll have morphine with me so I should be all right in terms of pain control.
Here's hoping for another nice day!
Friday, June 26, 2009
Busy, active, and energetic
Today has been a long and busy day, and I've been pleased to see my energy level being higher than it's been in awhile. I spent most of the day in the living room, which is working out very well. I was able to move there by myself, and several times I walked back to the bedroom to get some small things I'd forgotten (Marty or Ann were available to move bigger things, like the computer).
Marty was out a good part of the day, attending the ribbon-cutting ceremony for the new Islamic Society of Boston, so the weekly visit from Marie, the hospice chaplain, was just her and me. We had a good, wide-ranging talk, about books, about my recent activities, and about the value of hospice in people's lives and how to get that message out. I think for a lot of people, when they hear the word "hospice," they think it's all about some comatose person in the final stages of dying. They don't realize that hospice can be a way of helping seriously ill people to live as fully and joyously as possible--that's the message I want to try to deliver.
Although he was hoping to get back in time for my appointment with Chris, the CEO of the agency (which does visiting nurse services and home care as well as hospice), she actually arrived about twenty minutes before Marty did, giving us time to get acquainted. Everyone has told me how dynamic Chris is, and I have to agree. She's a nurse by training but has worked mostly as an administrator, and she is very excited about the agency adding hospice care to its mission. She said that, with the sponsorship of a local civic organization, she recently made a one minute promotional video that will be shown on local cable, and one idea we discussed was me making a similar video aimed at patients and families, trying to demystify hospice care and break through the fears and taboos. I also showed her the message I posted on the Obama health care site about the importance of including hospice care in overall health care reform.
Marty had said that if I was feeling up to it, he wanted us to go to a pot-luck sabbath dinner, for the members of the social action committee of the temple he is affiliated with. Before Chris arrived I'd gotten dressed, and I told Marty I definitely felt up to going out. The dinner was held in a member's home, just a short drive away, and there were maybe a dozen people gathered, a few of whom I'd met before. Although I had to sit when others were standing, I managed quite well, and enjoyed some good food, nice wine, and conversation, until I told Marty that I was running out of energy (we were the first to leave).
We've spent the rest of the evening relaxing, doing the crossword puzzle, and watching TV, and now it's time to go to sleep. The weather continues to be iffy--the sun tried to come out today, and it's rather muggy (we've got the air conditioning on for sleeping purposes). If it's reasonably nice tomorrow we may go out. I've sat on my glasses so many times they're completely bent out of shape and I can't really see out of them, and Marty thinks we should go back to Sears (where I got them) to get them worked on. If we do, we'll be right near the Legal Sea Foods in Burlington, where we can have a nice lunch.
Marty was out a good part of the day, attending the ribbon-cutting ceremony for the new Islamic Society of Boston, so the weekly visit from Marie, the hospice chaplain, was just her and me. We had a good, wide-ranging talk, about books, about my recent activities, and about the value of hospice in people's lives and how to get that message out. I think for a lot of people, when they hear the word "hospice," they think it's all about some comatose person in the final stages of dying. They don't realize that hospice can be a way of helping seriously ill people to live as fully and joyously as possible--that's the message I want to try to deliver.
Although he was hoping to get back in time for my appointment with Chris, the CEO of the agency (which does visiting nurse services and home care as well as hospice), she actually arrived about twenty minutes before Marty did, giving us time to get acquainted. Everyone has told me how dynamic Chris is, and I have to agree. She's a nurse by training but has worked mostly as an administrator, and she is very excited about the agency adding hospice care to its mission. She said that, with the sponsorship of a local civic organization, she recently made a one minute promotional video that will be shown on local cable, and one idea we discussed was me making a similar video aimed at patients and families, trying to demystify hospice care and break through the fears and taboos. I also showed her the message I posted on the Obama health care site about the importance of including hospice care in overall health care reform.
Marty had said that if I was feeling up to it, he wanted us to go to a pot-luck sabbath dinner, for the members of the social action committee of the temple he is affiliated with. Before Chris arrived I'd gotten dressed, and I told Marty I definitely felt up to going out. The dinner was held in a member's home, just a short drive away, and there were maybe a dozen people gathered, a few of whom I'd met before. Although I had to sit when others were standing, I managed quite well, and enjoyed some good food, nice wine, and conversation, until I told Marty that I was running out of energy (we were the first to leave).
We've spent the rest of the evening relaxing, doing the crossword puzzle, and watching TV, and now it's time to go to sleep. The weather continues to be iffy--the sun tried to come out today, and it's rather muggy (we've got the air conditioning on for sleeping purposes). If it's reasonably nice tomorrow we may go out. I've sat on my glasses so many times they're completely bent out of shape and I can't really see out of them, and Marty thinks we should go back to Sears (where I got them) to get them worked on. If we do, we'll be right near the Legal Sea Foods in Burlington, where we can have a nice lunch.
Thursday, June 25, 2009
Alternative therapies
I'm not sure whether it's the energy work with Barbara on Monday, the acupuncture with Anne yesterday, or today's massage session with Lisa (or maybe they all work synergistically), but right now I'm pain free. When Lisa arrived I was still having some localized pain in my left side, but after her very gentle yet targeted manipulations I'm feeling really good. I have so much more energy than last week (of course, this is only in comparative terms, as walking into the next room is still a major energy expenditure). I'm slowly moving my daytime base of operations into the living room, which seems like a good idea for several reasons. First is the simple change of scene. My living room, which is separated from the dining room by a wide archway, is very bright (even during these endless gloomy days), with lots of windows. And my wonderful chair is much more comfortable for sitting than being propped up in bed. Sleep experts also believe that people get the best sleep if the bed is used for just sleeping (by which I guess they mean sleeping and sex).
When Lauren comes tomorrow I want to talk with her about swimming. I don't think I can really swim, tethered to the oxygen, but I certainly can get into the water and float (I'm very buoyant) and paddle around a bit, and that would be one more form of bodywork. All I know is that being in water has always felt really good.
I woke up much too early this morning (around five); when Marty woke up he encouraged me to try to get back to sleep. He started falling back to sleep, but he had taken off his "elephant" (what we call our C-pap and bi-pap machines) and was starting to snore, so I told him I wouldn't be able to sleep unless he put it back on, which he did, and I got back to sleep until I was abruptly awakened by the phone at eight. It was Laurel, who told me she wasn't feeling well and wouldn't be able to come to work today. I tried calling Judy, who wasn't available, and then Diana, who was, so she was here until a little while ago, and I'm now waiting for Susan.
Marty took the car to our mechanic, as he has been theorizing that the problem with the oxygen machines may not be the machine, but instead may well be in the interface between the car charger and the electrical receptacle in the car. Our wonderfully honest mechanic diagnosed a problem with a fuse and charged all of nine dollars (why it's worth driving all the way to Burlington, about a twenty minute drive). So we will have to take the machine out on another test drive soon. At least today is not raining, and for awhile the sun was trying to come out, but the weather forecast shows that this gloomy weather is going to continue for awhile.
Nonetheless, I hope we can do a short excursion sometime in the next few days.
When Lauren comes tomorrow I want to talk with her about swimming. I don't think I can really swim, tethered to the oxygen, but I certainly can get into the water and float (I'm very buoyant) and paddle around a bit, and that would be one more form of bodywork. All I know is that being in water has always felt really good.
I woke up much too early this morning (around five); when Marty woke up he encouraged me to try to get back to sleep. He started falling back to sleep, but he had taken off his "elephant" (what we call our C-pap and bi-pap machines) and was starting to snore, so I told him I wouldn't be able to sleep unless he put it back on, which he did, and I got back to sleep until I was abruptly awakened by the phone at eight. It was Laurel, who told me she wasn't feeling well and wouldn't be able to come to work today. I tried calling Judy, who wasn't available, and then Diana, who was, so she was here until a little while ago, and I'm now waiting for Susan.
Marty took the car to our mechanic, as he has been theorizing that the problem with the oxygen machines may not be the machine, but instead may well be in the interface between the car charger and the electrical receptacle in the car. Our wonderfully honest mechanic diagnosed a problem with a fuse and charged all of nine dollars (why it's worth driving all the way to Burlington, about a twenty minute drive). So we will have to take the machine out on another test drive soon. At least today is not raining, and for awhile the sun was trying to come out, but the weather forecast shows that this gloomy weather is going to continue for awhile.
Nonetheless, I hope we can do a short excursion sometime in the next few days.
Wednesday, June 24, 2009
What a difference a day makes!
As predicted, I got to sleep last night with the aid of morphine, and slept pretty much through the night. Marty woke up at five, and although he doubted that he could get back to sleep, he did, and slept till eight (I slept a little more as well). He hasn't been sleeping well, so it was good to see him get some needed rest. The pain had receded back to just my left side, and was much milder, so whatever is going on, I'm feeling pretty confident that I don't have pneumonia, which is very good news.
I was feeling unusually hungry, since I had only a very light dinner last night, and I asked Marty to make me a cheese omelet, which I had with two Popeye's biscuits--a very big and very yummy breakfast, and I haven't been hungry since (it's now dinner time). Later in the morning I had a visit with Caren, one of my hospice volunteers; we moved into the living room and sat and talked for almost two hours. One area in which this hospice program is clearly superior to the previous one is in its volunteers--I never got a consistent volunteer in the previous program, and the ones that did come never did more than chit-chat, but with both Tim and Caren I have been having enjoyable and meaningful discussions. One thing that came up in the course of our conversation today is that I mentioned how much I love being in the water and swimming, and Caren said that her health club in Waltham (a nearby town) has a therapeutic pool, with warm water and a chair lift (separate from the lap pool, where the water is much cooler). Years ago, when I used to belong to a health club and swim laps, I remember the constant disagreements between the swimmers, who wanted the water cool, and the people who just played around in the water, who wanted it warm, so having separate pools is a really good idea. I'm going to ask Lauren or Katrina to check out a place where I can use a pool (Caren said when I talked about going in the water my eyes lit up).
Another thing she mentioned was that there is a rule that volunteers are not allowed to bring food to patients, and that she really wants to bring me some of her home-baked goodies. So she went to the volunteer director to discuss it with her, and apparently it's going to be evaluated on a case-by-case basis. We both can understand that there are some patients who may have medical reasons why they shouldn't receive food, but we both also like the flexibility that the program apparently has. Last week I gave Caren a recipe for some sesame apricot bars that are the rare treat that don't taste at all like the stereotype of health food desserts (back in my baking days I've made them for lots of people who agreed they were delicious).
After Caren left I had about an hour before Anne was due to give me my acupuncture treatment. I wasn't hungry for lunch, and Marty wanted to go out, so he made me a chicken salad sandwich and left it in the refrigerator in case I got hungry while he was gone. When Anne came I moved onto the daybed in the office, and told her about the pain I'd been having (which was considerably diminished). She put a needle into the tenderest spot on each side, and asked if I felt a pinching or drawing feeling, which I did, and which she said indicated that it was working. She inserted some other needles, and I lay comfortably in the dreamy state that acupuncture almost always puts me into. Anne had mentioned that she would bring a space blanket (those high tech foil things) instead of the little down throw I usually use, and when she spread it over me I felt a comfortable warmth that contributed to the state of comfortable reverie.
Often I fall asleep after acupuncture, but after lying comfortably for a short while I decided I didn't want to sleep. I was feeling pain free for the first time in days, and energized. I moved back to the bedroom, and as soon as I sat down on the bed realized I should have made a stop in the bathroom (which I had walked right past); and I just could not hold back from wetting the bed. Every time this happens, I start using the disposable pads, but they bunch up and after a few days just seem to be more in the way than anything else. I knew Susan was coming, so I just sat there, somewhat uncomfortably, until she arrived. It was getting a little on the late side, and I was beginning to wonder whether I remembered incorrectly, but I was pretty sure she had said when she left yesterday that she would be here again today (we'd been sitting and watching the old movie Anatomy of a Murder), but then she called and said she was running a little late, and was wondering whether I still wanted her to come, so I said I needed her. She very efficiently got everything off the bed and the wet stuff into the wash, and then got the bed made up with fresh sheets while I rested on the daybed. After moving back to bed and resting for a bit, and feeling really good, I decided to take a shower--I don't even want to think about how long it's been since my last shower, and it felt so good!
So right now I'm comfortable, clean, and relatively pain free--what a difference a day makes indeed!
I was feeling unusually hungry, since I had only a very light dinner last night, and I asked Marty to make me a cheese omelet, which I had with two Popeye's biscuits--a very big and very yummy breakfast, and I haven't been hungry since (it's now dinner time). Later in the morning I had a visit with Caren, one of my hospice volunteers; we moved into the living room and sat and talked for almost two hours. One area in which this hospice program is clearly superior to the previous one is in its volunteers--I never got a consistent volunteer in the previous program, and the ones that did come never did more than chit-chat, but with both Tim and Caren I have been having enjoyable and meaningful discussions. One thing that came up in the course of our conversation today is that I mentioned how much I love being in the water and swimming, and Caren said that her health club in Waltham (a nearby town) has a therapeutic pool, with warm water and a chair lift (separate from the lap pool, where the water is much cooler). Years ago, when I used to belong to a health club and swim laps, I remember the constant disagreements between the swimmers, who wanted the water cool, and the people who just played around in the water, who wanted it warm, so having separate pools is a really good idea. I'm going to ask Lauren or Katrina to check out a place where I can use a pool (Caren said when I talked about going in the water my eyes lit up).
Another thing she mentioned was that there is a rule that volunteers are not allowed to bring food to patients, and that she really wants to bring me some of her home-baked goodies. So she went to the volunteer director to discuss it with her, and apparently it's going to be evaluated on a case-by-case basis. We both can understand that there are some patients who may have medical reasons why they shouldn't receive food, but we both also like the flexibility that the program apparently has. Last week I gave Caren a recipe for some sesame apricot bars that are the rare treat that don't taste at all like the stereotype of health food desserts (back in my baking days I've made them for lots of people who agreed they were delicious).
After Caren left I had about an hour before Anne was due to give me my acupuncture treatment. I wasn't hungry for lunch, and Marty wanted to go out, so he made me a chicken salad sandwich and left it in the refrigerator in case I got hungry while he was gone. When Anne came I moved onto the daybed in the office, and told her about the pain I'd been having (which was considerably diminished). She put a needle into the tenderest spot on each side, and asked if I felt a pinching or drawing feeling, which I did, and which she said indicated that it was working. She inserted some other needles, and I lay comfortably in the dreamy state that acupuncture almost always puts me into. Anne had mentioned that she would bring a space blanket (those high tech foil things) instead of the little down throw I usually use, and when she spread it over me I felt a comfortable warmth that contributed to the state of comfortable reverie.
Often I fall asleep after acupuncture, but after lying comfortably for a short while I decided I didn't want to sleep. I was feeling pain free for the first time in days, and energized. I moved back to the bedroom, and as soon as I sat down on the bed realized I should have made a stop in the bathroom (which I had walked right past); and I just could not hold back from wetting the bed. Every time this happens, I start using the disposable pads, but they bunch up and after a few days just seem to be more in the way than anything else. I knew Susan was coming, so I just sat there, somewhat uncomfortably, until she arrived. It was getting a little on the late side, and I was beginning to wonder whether I remembered incorrectly, but I was pretty sure she had said when she left yesterday that she would be here again today (we'd been sitting and watching the old movie Anatomy of a Murder), but then she called and said she was running a little late, and was wondering whether I still wanted her to come, so I said I needed her. She very efficiently got everything off the bed and the wet stuff into the wash, and then got the bed made up with fresh sheets while I rested on the daybed. After moving back to bed and resting for a bit, and feeling really good, I decided to take a shower--I don't even want to think about how long it's been since my last shower, and it felt so good!
So right now I'm comfortable, clean, and relatively pain free--what a difference a day makes indeed!
Tuesday, June 23, 2009
Not sure what's happening
The pain I had in just one spot in my chest yesterday has been slowly expanding, and by late this afternoon I was having pain through my whole chest and around the back. It's a pain that I've often had when I've been diagnosed with pneumonia, although today my breathing doesn't seem to be affected all that much. I called Lauren, and she told me to do a nebulizer treatment and take some morphine, and that she would call back in a little while, and when she did she decided to come over to check me out. I don't have any fever, so she told me to just keep monitoring my temperature, and to call if anything changes.
For awhile I thought the pain was gone, but I guess it was just the effects of the morphine, because the pain started up again an hour or so ago. I took some more morphine and am waiting to see if it will work, so I can get to sleep (sleeping seems the best thing to do under the circumstances). I still don't have any fever, which is a good thing, but the pain is pretty bad. I guess I'll just have to see how things are in the morning.
I'm not sure what to do if I do have pneumonia...all I know is that I don't want to go to the hospital, and I'm not going to. Lauren said there's no reason to give me antibiotics unless I have a fever. I'm feeling anxious and scared.
For awhile I thought the pain was gone, but I guess it was just the effects of the morphine, because the pain started up again an hour or so ago. I took some more morphine and am waiting to see if it will work, so I can get to sleep (sleeping seems the best thing to do under the circumstances). I still don't have any fever, which is a good thing, but the pain is pretty bad. I guess I'll just have to see how things are in the morning.
I'm not sure what to do if I do have pneumonia...all I know is that I don't want to go to the hospital, and I'm not going to. Lauren said there's no reason to give me antibiotics unless I have a fever. I'm feeling anxious and scared.
Monday, June 22, 2009
Feeling stronger again
After last week, when I felt so overwhelmingly exhausted, and was having coughing spells every morning lasting for several hours, things have improved dramatically. I have finally started using my nebulizer medication regularly, which Lauren has been urging me to do (and Kathy before her), and it is making a difference. Lauren said that when she listened to my chest this morning she didn't hear any wheezing at all! The reason I have been so resistant to using the nebulizer is that it gives me an unpleasant, jittery feeling; Lauren says that symptom may ease if I keep at it consistently, so I'm going to give it a try.
Feeling better physically of course also means feeling better emotionally. Last week I felt that there was no point in continuing to go on living; now, once again, I feel I have a mission and a purpose, and although I am so physically weak, I know there are ways of getting this message out. Part of what was contributing to my malaise was feeling so useless; now I have work to do.
I'm going to have to give some thought as to the best way to do this, and who can help; writing this blog is the first step, and I know I'll figure out what comes next.
Feeling better physically of course also means feeling better emotionally. Last week I felt that there was no point in continuing to go on living; now, once again, I feel I have a mission and a purpose, and although I am so physically weak, I know there are ways of getting this message out. Part of what was contributing to my malaise was feeling so useless; now I have work to do.
I'm going to have to give some thought as to the best way to do this, and who can help; writing this blog is the first step, and I know I'll figure out what comes next.
Sunday, June 21, 2009
Purpose and meaning
Over the years, as I developed my accidental "career" as a crusader for patients' rights, one thing kind of led to another. In the beginning, I never imagined that I could make any money at it--it was just something I had to do. In 1971, when I heard about the Mental Patients' Liberation Project and went to my first meeting, I immediately felt that I had found a home, found some way of giving purpose and meaning to the awful experiences of being committed to a mental hospital and given drugs against my will (this is all discussed in much more detail in my book, On Our Own). Eventually, membership in the group led to speaking engagements, and after writing the book to many more, and then I even began to be paid for some of them.
In later years, when I was doing a lot of traveling to conferences and meetings, and I'd occasionally strike up a conversation on a plane, people used to ask me how I got into this line of work, and I used a line I stole from JFK. He was asked how he became a war hero, and his answer was, "It was involuntary; they sank my boat." So I would say, "It was involuntary, I got committed to a mental hospital."
There have been many twists and turns along the way, but always guided by a fundamental principle: that people with psychiatric labels deserved the same rights to liberty and independence as everyone else. Sometimes the work was about changing laws, sometimes changing public attitudes, or about providing self-help alternatives, but the overarching principle always remained the same. I never thought about retirement, because I loved what I was doing so much and felt that it was useful and important work. So when I started getting so sick about two years ago, it was a major shift to go from a life of constant travel and activism to one of being able to do very little, and it's been very hard emotionally.
So now, having given further thought to our discussion with Marie the other day, it seems that I do have one more piece of unfinished work, which is promoting the value and importance of hospice. I find it very sad that far too many people enter hospice only within a few days of death, when they can derive only a small benefit. Surveys show that most people say they want to die at home, and yet most deaths take place in hospitals. There are a lot of reasons. Death is the last taboo, and most people don't want to confront the fact of their (or a loved one's) imminent death. Doctors see death as their "failure," and often won't make hospice referrals when it is appropriate. Families are often split, with some arguing for every possible treatment while others are more concerned with comfort.
I want people to see the value of hospice. Ever since I made the decision, late last year, to give up on treatments that were not accomplishing anything, and focus instead on getting the most possible enjoyment in the time I have left, I have felt a great sense of peace. I'm lucky that Marty, Julie, and I are all on the same page and don't have to face the divisions that some families do. Given the choice, I'd rather be strong and healthy and go back to the life I left behind, but I don't have that choice. So, with the cards I've been dealt, I'll do my best to let people know that there is value in last days, and how important it is to insure that the dying person has the option to make choices that maximize his or her own values and desires.
In later years, when I was doing a lot of traveling to conferences and meetings, and I'd occasionally strike up a conversation on a plane, people used to ask me how I got into this line of work, and I used a line I stole from JFK. He was asked how he became a war hero, and his answer was, "It was involuntary; they sank my boat." So I would say, "It was involuntary, I got committed to a mental hospital."
There have been many twists and turns along the way, but always guided by a fundamental principle: that people with psychiatric labels deserved the same rights to liberty and independence as everyone else. Sometimes the work was about changing laws, sometimes changing public attitudes, or about providing self-help alternatives, but the overarching principle always remained the same. I never thought about retirement, because I loved what I was doing so much and felt that it was useful and important work. So when I started getting so sick about two years ago, it was a major shift to go from a life of constant travel and activism to one of being able to do very little, and it's been very hard emotionally.
So now, having given further thought to our discussion with Marie the other day, it seems that I do have one more piece of unfinished work, which is promoting the value and importance of hospice. I find it very sad that far too many people enter hospice only within a few days of death, when they can derive only a small benefit. Surveys show that most people say they want to die at home, and yet most deaths take place in hospitals. There are a lot of reasons. Death is the last taboo, and most people don't want to confront the fact of their (or a loved one's) imminent death. Doctors see death as their "failure," and often won't make hospice referrals when it is appropriate. Families are often split, with some arguing for every possible treatment while others are more concerned with comfort.
I want people to see the value of hospice. Ever since I made the decision, late last year, to give up on treatments that were not accomplishing anything, and focus instead on getting the most possible enjoyment in the time I have left, I have felt a great sense of peace. I'm lucky that Marty, Julie, and I are all on the same page and don't have to face the divisions that some families do. Given the choice, I'd rather be strong and healthy and go back to the life I left behind, but I don't have that choice. So, with the cards I've been dealt, I'll do my best to let people know that there is value in last days, and how important it is to insure that the dying person has the option to make choices that maximize his or her own values and desires.
Saturday, June 20, 2009
An excursion and a lot of fun
It's been an unseasonably cool late spring, with lots of rain, but today's weather forecast was promising, and although it was overcast and still cool, the rain did hold off. I was feeling good, and Marty thought we should take advantage of those facts and go to ride the carousel at Nantasket Beach in Hull, which is a town on the ocean south of Boston. The carousel is one of the oldest in the country and was originally part of a large amusement park called Paragon Park, but when it was shut down the carousel was saved (it actually had to be moved about half a block from its original location).
We left around ten. It's about a forty minute drive, and although we weren't sure exactly where the carousel was, I suddenly pointed it out just as we were about to pass it. The street that runs alongside it was blocked off because of a display of historic cars, so we asked a policeman who was directing traffic where to park, telling him we were disabled and showing our disabled parking pass, and he said to park in the lot of a restaurant across the street. Marty got the scooter out of the trunk, and we had a little scare when at first the charge indicator showed that it was almost out of power, but after running it for a few minutes the needle moved into the yellow zone and eventually back into the green zone.
We had decided to take my three stuffed bears, Pinkypine, Bo-Bo, and Elbee with us (they ride in the scooter basket--they also came when I got the award at the MAMH gala a few weeks ago). When we went to get tickets the woman wanted to know how much assistance I would need, so I told her I could park the scooter and walk, and she showed us a place where it would be out of the way. The only hard part was climbing up on the horse, but I made it (Marty struggled too). We made sure to get on the horses that go up and down, rather than the stationary ones, and it was such a wonderful, nostalgic feeling, with the music and the painted horses, and I had fun waving at the bears every time we went by. When the ride was over Marty told me to stay on and he got off and took a lot of pictures while I rode the second time. When the ride stopped I asked the woman who was running it for some assistance getting down, and she suggested that she turn it back on for just a few seconds to get the horse into the lowest position, which was trickier than it sounded and took a couple of tries.
We then strolled along (me in the scooter, of course), stopping in an arcade where Marty decided to try his hand at Skee-Ball, which he hadn't played since he was a kid. He played a few rounds and ended up with a pile of tickets, which could be exchanged for prizes, and I got a statuette of two little cats (he actually had to go back and play another game because we were a few tickets short). Then we took a look at the classic cars which were parked along both sides of the street, all beautifully maintained and clearly the pride and joy of their owners.
When we went back to the car we decided to check out the restaurant since we were parked there anyway, and it turned out to be quite nice, right on the water, with classic New England seafood. I had fried clams and Marty had fish and chips, we each had a beer, and it was great that I wasn't anywhere near as tired as I thought I might be.
One other purpose of the excursion was to check out the new oxygen concentrator we will need if we go on a longer trip. For short trips I can use the portable tank that fills from the big liquid oxygen tank, but that lasts for only about six hours. The concentrator works, theoretically, on house current, battery power, and car current, but we had all kinds of troubles with the last machine (I think we had three different ones) and were eager to try out this one, which is a totally different model, from a different company. On the way down in the car it was fine, running on car current. I used the portable while we were on the carousel and having lunch, and when we got back in the car Marty hooked me back up to the concentrator on car current. After about fifteen minutes it started to beep ominously, and, once we had found a place to pull over and check it out, it seemed like it was just not holding a charge (which is the same thing that had happened to us with the last machine). So we are going to have to call the oxygen company and see what they can do.
We've had a quiet rest of the day. I've been resting, Marty actually took a little nap, and we did the Saturday Times puzzle, the most challenging of the week, which we struggled with for awhile but finally got (we did have to look up a few things). I'm tired, but less tired than I expected, and less tired than I've felt on many days recently when I haven't done anything. After a few days of feeling so blue, I really needed a day like this.
(Note: I put a new link to photos of the Helsinki church in the blog entry on the meaning of suffering--check them out.)
We left around ten. It's about a forty minute drive, and although we weren't sure exactly where the carousel was, I suddenly pointed it out just as we were about to pass it. The street that runs alongside it was blocked off because of a display of historic cars, so we asked a policeman who was directing traffic where to park, telling him we were disabled and showing our disabled parking pass, and he said to park in the lot of a restaurant across the street. Marty got the scooter out of the trunk, and we had a little scare when at first the charge indicator showed that it was almost out of power, but after running it for a few minutes the needle moved into the yellow zone and eventually back into the green zone.
We had decided to take my three stuffed bears, Pinkypine, Bo-Bo, and Elbee with us (they ride in the scooter basket--they also came when I got the award at the MAMH gala a few weeks ago). When we went to get tickets the woman wanted to know how much assistance I would need, so I told her I could park the scooter and walk, and she showed us a place where it would be out of the way. The only hard part was climbing up on the horse, but I made it (Marty struggled too). We made sure to get on the horses that go up and down, rather than the stationary ones, and it was such a wonderful, nostalgic feeling, with the music and the painted horses, and I had fun waving at the bears every time we went by. When the ride was over Marty told me to stay on and he got off and took a lot of pictures while I rode the second time. When the ride stopped I asked the woman who was running it for some assistance getting down, and she suggested that she turn it back on for just a few seconds to get the horse into the lowest position, which was trickier than it sounded and took a couple of tries.
We then strolled along (me in the scooter, of course), stopping in an arcade where Marty decided to try his hand at Skee-Ball, which he hadn't played since he was a kid. He played a few rounds and ended up with a pile of tickets, which could be exchanged for prizes, and I got a statuette of two little cats (he actually had to go back and play another game because we were a few tickets short). Then we took a look at the classic cars which were parked along both sides of the street, all beautifully maintained and clearly the pride and joy of their owners.
When we went back to the car we decided to check out the restaurant since we were parked there anyway, and it turned out to be quite nice, right on the water, with classic New England seafood. I had fried clams and Marty had fish and chips, we each had a beer, and it was great that I wasn't anywhere near as tired as I thought I might be.
One other purpose of the excursion was to check out the new oxygen concentrator we will need if we go on a longer trip. For short trips I can use the portable tank that fills from the big liquid oxygen tank, but that lasts for only about six hours. The concentrator works, theoretically, on house current, battery power, and car current, but we had all kinds of troubles with the last machine (I think we had three different ones) and were eager to try out this one, which is a totally different model, from a different company. On the way down in the car it was fine, running on car current. I used the portable while we were on the carousel and having lunch, and when we got back in the car Marty hooked me back up to the concentrator on car current. After about fifteen minutes it started to beep ominously, and, once we had found a place to pull over and check it out, it seemed like it was just not holding a charge (which is the same thing that had happened to us with the last machine). So we are going to have to call the oxygen company and see what they can do.
We've had a quiet rest of the day. I've been resting, Marty actually took a little nap, and we did the Saturday Times puzzle, the most challenging of the week, which we struggled with for awhile but finally got (we did have to look up a few things). I'm tired, but less tired than I expected, and less tired than I've felt on many days recently when I haven't done anything. After a few days of feeling so blue, I really needed a day like this.
(Note: I put a new link to photos of the Helsinki church in the blog entry on the meaning of suffering--check them out.)
Friday, June 19, 2009
Musings of a proud grandma
My oldest grandchild, Evelyn, who is fourteen, has turned into a strikingly beautiful young woman. One of her interests is contra dancing, and the kids in her contra dance group decided to hold a "contra prom." So yesterday she came down to model her dress for me before leaving for the prom, and today she reported on how much fun she had.
It was last summer when I suddenly realized that she was no longer a little girl. I was sitting on the porch and she came up the steps and for a split-second I didn't know who this young woman was, before suddenly realizing it was Evelyn.
My two other grandchildren are also wonderful. Kyle, who is twelve, and Vivian, seven, are leaving next week for two weeks at Quaker camp in Maine (Evelyn is going to a session later in the summer). I love them so much and feel sad that I'm not going to see them grow up.
It was last summer when I suddenly realized that she was no longer a little girl. I was sitting on the porch and she came up the steps and for a split-second I didn't know who this young woman was, before suddenly realizing it was Evelyn.
My two other grandchildren are also wonderful. Kyle, who is twelve, and Vivian, seven, are leaving next week for two weeks at Quaker camp in Maine (Evelyn is going to a session later in the summer). I love them so much and feel sad that I'm not going to see them grow up.
Does suffering have meaning?
I woke up this morning feeling blue. I'm tired--tired of growing ever weaker, tired of everything being such a struggle, tired of "being brave" and "handling it so well" and all the other things people tell me I am doing. It's funny--for the person who dies, just suddenly keeling over and dying in an instant is probably the easiest way to go, but hardest on the survivors. Conversely, dying slowly gives the survivors lots of time to work through their feelings (although the death still comes as a shock), but it sure is hard on the dying person.
Lauren arrived to check me out and I told her how blue I was feeling, so she started out with a hug. Hugs are always good. She and the hospice medical director have decided to try me out on a form of long-acting, time release morphine, a pill taken every twelve hours, to see if that will regulate my breathing and occasional pain better than the short acting liquid morphine I've been using. I'm going to start it on Sunday and she will see me on Monday morning to see how it's working. I've been good about doing breathing treatments and it really has drastically cut down on the amount of coughing I've been doing, so it certainly is worth the jitteriness that I hate.
Marie arrived while Lauren was finishing up. It's cool and rainy again so we couldn't sit outside, but Marty set things up in the dining room. Marty is definitely not a morning person, but he went out to the bagel place (which has genuine New York City H&H bagels), only to discover that because of "production problems in New York" they were out of a number of varieties, but he did get onion, sesame, poppy, and egg. He had two kinds of cream cheese (chive and plain), sliced onions, and sliced tomatoes, along with a pot of tea, so it was quite a feast. We ate and talked for awhile until I was too tired to sit up, at which point we moved into the living room and Marty brought in my chair from the porch (which he thought might be too wet but wasn't).
We then had a long and fascinating conversation about spirituality (I usually describe myself as "the least spiritual person I know," which Marty is skeptical about). One of the few experiences I have ever described as spiritual occurred in Helsinki in a church carved into solid rock ( www.galenfrysinger.com/helsinki_stone_church.htm) a beautiful, peaceful, unadorned space with incredible acoustics. On the day I visited there was no service and the organist was practicing (he actually asked me if I minded!), and I just sat there and let this incredible music wash over me.
Picking up on my feelings of being blue and tired Marie asked whether I saw any meaning in my suffering, and wondered whether I had ever blogged about it, so here goes. I know some people believe that everything has a purpose or is part of god's plan, which does nothing for a confirmed atheist like me. My dad, another strong atheist, used to say that if you need any proof of the non-existence of god just visit a children's cancer ward, and I agree with him. So I don't see meaning in all this exhaustion and struggle, and I'd just as soon have it over with.
Marty is planning some outings for us. Tomorrow may be the one nice day in a bunch of rainy ones, and if so, we might be able to get to the carousel at Nantasket, and he says he's been searching for other interesting things within my abilities. He is so amazing, taking care of me not just physically, which is hard enough, but trying so hard to cheer me when there's not much to be cheerful about.
Marty and Marie also talked a lot about his experiences in Israel and how hard it is to work for peace in Israel and Palestine when it is such a minority position; so similar to my work countering the "conventional wisdom" of mental illness as brain disease. Both of us feel compelled to do this work, and for me it's so good to know that so many others are picking up what I am having to put down.
When Marie left I came back to bed (Ann having made up with fresh sheets, which always feels so good) and I slept for an hour. I wish I could say I feel refreshed but I still feel tired.
Lauren arrived to check me out and I told her how blue I was feeling, so she started out with a hug. Hugs are always good. She and the hospice medical director have decided to try me out on a form of long-acting, time release morphine, a pill taken every twelve hours, to see if that will regulate my breathing and occasional pain better than the short acting liquid morphine I've been using. I'm going to start it on Sunday and she will see me on Monday morning to see how it's working. I've been good about doing breathing treatments and it really has drastically cut down on the amount of coughing I've been doing, so it certainly is worth the jitteriness that I hate.
Marie arrived while Lauren was finishing up. It's cool and rainy again so we couldn't sit outside, but Marty set things up in the dining room. Marty is definitely not a morning person, but he went out to the bagel place (which has genuine New York City H&H bagels), only to discover that because of "production problems in New York" they were out of a number of varieties, but he did get onion, sesame, poppy, and egg. He had two kinds of cream cheese (chive and plain), sliced onions, and sliced tomatoes, along with a pot of tea, so it was quite a feast. We ate and talked for awhile until I was too tired to sit up, at which point we moved into the living room and Marty brought in my chair from the porch (which he thought might be too wet but wasn't).
We then had a long and fascinating conversation about spirituality (I usually describe myself as "the least spiritual person I know," which Marty is skeptical about). One of the few experiences I have ever described as spiritual occurred in Helsinki in a church carved into solid rock ( www.galenfrysinger.com/helsinki_stone_church.htm) a beautiful, peaceful, unadorned space with incredible acoustics. On the day I visited there was no service and the organist was practicing (he actually asked me if I minded!), and I just sat there and let this incredible music wash over me.
Picking up on my feelings of being blue and tired Marie asked whether I saw any meaning in my suffering, and wondered whether I had ever blogged about it, so here goes. I know some people believe that everything has a purpose or is part of god's plan, which does nothing for a confirmed atheist like me. My dad, another strong atheist, used to say that if you need any proof of the non-existence of god just visit a children's cancer ward, and I agree with him. So I don't see meaning in all this exhaustion and struggle, and I'd just as soon have it over with.
Marty is planning some outings for us. Tomorrow may be the one nice day in a bunch of rainy ones, and if so, we might be able to get to the carousel at Nantasket, and he says he's been searching for other interesting things within my abilities. He is so amazing, taking care of me not just physically, which is hard enough, but trying so hard to cheer me when there's not much to be cheerful about.
Marty and Marie also talked a lot about his experiences in Israel and how hard it is to work for peace in Israel and Palestine when it is such a minority position; so similar to my work countering the "conventional wisdom" of mental illness as brain disease. Both of us feel compelled to do this work, and for me it's so good to know that so many others are picking up what I am having to put down.
When Marie left I came back to bed (Ann having made up with fresh sheets, which always feels so good) and I slept for an hour. I wish I could say I feel refreshed but I still feel tired.
Thursday, June 18, 2009
A busy day, followed by a tired one
Yesterday was such a good day, but I may have done too much. In the morning, Julie, Marty and I met with the guy from the funeral service, who explained pre-paid cremation and didn't try to sell us any extras or do anything that seemed sleazy, so we decided to sign a contract with him and I wrote a check. My dad had done something similar, and I remember that when he died Julie and I just had to make one phone call and within a few hours two men arrived to remove the body, and some weeks later we got back a box with his ashes, and I want it to be that simple for Julie and Marty.
Then my volunteer, Caren, came and we decided to sit out on the porch. It was lovely, just slightly chilly, so I put my little blanket over my legs. We had a nice talk--I just feel very comfortable with her, and look forward to her coming back next week.
Anne came at two to give me acupuncture. I was still feeling some soreness in my side, so I really needed to feel relaxed and at ease, and, as usual, acupuncture left me feeling very calm and I drifted off to sleep for a short while after she left. When Bob arrived I decided to sit outside again; this time it was warmer, and I didn't need the blanket. Bob and I talked about changes in the mental health system, the role of ex-patient groups, the power of the drug companies, and lots of other things. His new book will be about how, despite claims that drugs are helping people to function better, more people than ever are on the SSI/SSDI rolls because of mental illness. Bob is the rare journalist who has looked beyond the press releases of the drug companies and the psychiatric profession; his book, Mad in America, is one of the most important books in the field, and I'm looking forward to the new one (http://www.madinamerica.com/).
Bob went out to get some Chinese food, and then he, Marty, and I sat in the dining room and ate and talked. By this time I was feeling quite tired, and after eating a bit I told them I needed to go to bed, and in fact fell asleep quite quickly. I asked Marty today how long Bob stayed and he said "hours," so I guess they had a good talk.
I had a strange night's sleep, coming half awake a number of times, feeling a lot of pressure in my chest, so I woke up feeling tired and I've been tired all day. Barbara, who is a physical therapist with hospice, came in the mid-morning and did what she called "energy work," placing her hands on different parts of my body and creating different feelings, like warmth, relaxation, and tingling. I told her that I usually had massage on Thursday (Lisa sent me an e-mail that she couldn't come this week), so Mondays or Tuesdays would be better days, and she said Mondays would work for her, so now it will be Mondays with Barbara, acupuncture on Wednesdays, and massage on Thursdays. I was lying on the daybed in the office while she did this, and when she left I went back to my bed and almost immediately fell asleep.
We had been expecting Laurel and when she didn't arrive I called her and found she was stuck on the side of the road with a flat tire waiting for AAA; it turned out she had to wait for two hours. She said she had gotten another flat the day before, while she was trying to deliver all the clothes she and Julie had sorted, and they had put a plug in it which clearly didn't hold.
Marty had plans to be out in the evening, so I called Judy, who said she could stay for a few hours; it's after six now; Marty left a little while ago and Judy just arrived. I told her I'd like her to stick around to give me dinner, but I had so much leftover Chinese food for lunch that I'm not sure if I'm going to be hungry for dinner.
The weather is totally different from yesterday--it's grey and rainy and a little on the chilly side, and supposed to be that way most of the weekend, so I guess we're not going to ride the carousel at Nantasket ( http://www.paragoncarousel.com/) this weekend, but as soon as there's a nice day and I'm feeling up to going out, that's definitely something we want to do.
Then my volunteer, Caren, came and we decided to sit out on the porch. It was lovely, just slightly chilly, so I put my little blanket over my legs. We had a nice talk--I just feel very comfortable with her, and look forward to her coming back next week.
Anne came at two to give me acupuncture. I was still feeling some soreness in my side, so I really needed to feel relaxed and at ease, and, as usual, acupuncture left me feeling very calm and I drifted off to sleep for a short while after she left. When Bob arrived I decided to sit outside again; this time it was warmer, and I didn't need the blanket. Bob and I talked about changes in the mental health system, the role of ex-patient groups, the power of the drug companies, and lots of other things. His new book will be about how, despite claims that drugs are helping people to function better, more people than ever are on the SSI/SSDI rolls because of mental illness. Bob is the rare journalist who has looked beyond the press releases of the drug companies and the psychiatric profession; his book, Mad in America, is one of the most important books in the field, and I'm looking forward to the new one (http://www.madinamerica.com/).
Bob went out to get some Chinese food, and then he, Marty, and I sat in the dining room and ate and talked. By this time I was feeling quite tired, and after eating a bit I told them I needed to go to bed, and in fact fell asleep quite quickly. I asked Marty today how long Bob stayed and he said "hours," so I guess they had a good talk.
I had a strange night's sleep, coming half awake a number of times, feeling a lot of pressure in my chest, so I woke up feeling tired and I've been tired all day. Barbara, who is a physical therapist with hospice, came in the mid-morning and did what she called "energy work," placing her hands on different parts of my body and creating different feelings, like warmth, relaxation, and tingling. I told her that I usually had massage on Thursday (Lisa sent me an e-mail that she couldn't come this week), so Mondays or Tuesdays would be better days, and she said Mondays would work for her, so now it will be Mondays with Barbara, acupuncture on Wednesdays, and massage on Thursdays. I was lying on the daybed in the office while she did this, and when she left I went back to my bed and almost immediately fell asleep.
We had been expecting Laurel and when she didn't arrive I called her and found she was stuck on the side of the road with a flat tire waiting for AAA; it turned out she had to wait for two hours. She said she had gotten another flat the day before, while she was trying to deliver all the clothes she and Julie had sorted, and they had put a plug in it which clearly didn't hold.
Marty had plans to be out in the evening, so I called Judy, who said she could stay for a few hours; it's after six now; Marty left a little while ago and Judy just arrived. I told her I'd like her to stick around to give me dinner, but I had so much leftover Chinese food for lunch that I'm not sure if I'm going to be hungry for dinner.
The weather is totally different from yesterday--it's grey and rainy and a little on the chilly side, and supposed to be that way most of the weekend, so I guess we're not going to ride the carousel at Nantasket ( http://www.paragoncarousel.com/) this weekend, but as soon as there's a nice day and I'm feeling up to going out, that's definitely something we want to do.
Tuesday, June 16, 2009
A very good day
After all that sleep I've been awake and alert all day. Marty had a couple of doctors' appointments, so he left a little before ten, after giving me some breakfast, and Laurel arrived around eleven. She and Julie decided to do a big decluttering job--taking lots of clothes that I'll never fit into again and getting them ready to donate to various places, and meanwhile clearing spaces in my armoire and closet for Marty to keep his things, which he's been leaving in piles on the floor. This should make it much easier for him to keep his things organized.
We were supposed to meet with the guy from the cremation service this afternoon, but Marty called and said his doctor's schedule was running very late and he wouldn't be back in time, so we've rescheduled that for tomorrow. Katrina, the hospice social worker, came for her appointment at three, and she, Julie, and I talked for awhile until Marty arrived. She wants to help with the logistics of the New York trip, once we figure out dates, where we want to stay, whether we want to see a show, and other details. We'll try to figure that out in the next day or two.
I'm slowly beginning to eat again. Julie brought me some vegetable soup from Whole Foods for lunch and Marty is out now getting some Singapore noodles from the Chinese takeout in Arlington Center, which will be the most food I've eaten for awhile.
Tomorrow should be a good day--I've got acupuncture, then my friend Bob Whitaker is coming to interview me for his new book, and then he's going to go out and bring back some take-out for dinner for the three of us. Last time Bob was here he and Marty really hit it off--I'm always glad when my friends like one another.
When Marty got back last night it was after ten, and since Diana doesn't have a car and we didn't want her taking the bus at night, he drove her home (it's probably only about a ten minute drive); as soon as she got in the car they realized they knew each other! She's a member of the Cambridge Friends Meeting and Marty has spoken there a number of times. When she and I were talking yesterday we discovered we also knew a number of people in common--another of those small world things.
Amazingly enough, I hardly did any coughing at all today.
We were supposed to meet with the guy from the cremation service this afternoon, but Marty called and said his doctor's schedule was running very late and he wouldn't be back in time, so we've rescheduled that for tomorrow. Katrina, the hospice social worker, came for her appointment at three, and she, Julie, and I talked for awhile until Marty arrived. She wants to help with the logistics of the New York trip, once we figure out dates, where we want to stay, whether we want to see a show, and other details. We'll try to figure that out in the next day or two.
I'm slowly beginning to eat again. Julie brought me some vegetable soup from Whole Foods for lunch and Marty is out now getting some Singapore noodles from the Chinese takeout in Arlington Center, which will be the most food I've eaten for awhile.
Tomorrow should be a good day--I've got acupuncture, then my friend Bob Whitaker is coming to interview me for his new book, and then he's going to go out and bring back some take-out for dinner for the three of us. Last time Bob was here he and Marty really hit it off--I'm always glad when my friends like one another.
When Marty got back last night it was after ten, and since Diana doesn't have a car and we didn't want her taking the bus at night, he drove her home (it's probably only about a ten minute drive); as soon as she got in the car they realized they knew each other! She's a member of the Cambridge Friends Meeting and Marty has spoken there a number of times. When she and I were talking yesterday we discovered we also knew a number of people in common--another of those small world things.
Amazingly enough, I hardly did any coughing at all today.
The sleep "cure"
Not only did I sleep almost all day yesterday, but I slept through the night as well and am feeling pretty good. It's about seven; Marty is still sleeping and I don't want to wake him since he got even less sleep than I did the other night and then was busy all day (he didn't get home till after ten).
I forgot to mention in yesterday's entry that during one of my brief periods of wakefulness my volunteer, Tim, stopped by. He sat on the bed and chatted for a little while (after making sure that I wanted him to stay), until I told him I felt another wave of sleepiness coming on. I had totally forgotten about it until after I finished writing last night--I guess it was kind of dreamlike.
I still have some pain in my side, but it's not intense, so it's beginning to look like a pulled muscle rather than a cracked rib (which takes weeks to heal). I've taken hardly any morphine (I think one small dose last evening) and seem to be breathing all right and just generally feeling better. In the midst of feeling so awful yesterday I was too weak even to make it to the bathroom so I just peed onto one of the disposable pads. Lauren is supposed to be bringing a bedpan so we'll be prepared the next time this happens, but I've been making it to the bathroom on my own since yesterday afternoon.
It looks like the oxygen guy was right--with the humidity dial turned down, the bi-pap worked fine and didn't fill with water last night. I really wasn't sure if he knew what he was talking about but figured I had to give it a try.
Except for some cinnamon raisin toast which Diana made me last night, I didn't eat at all yesterday. I kept drinking because I was thirsty, which is important, but skipping a few meals won't do me any harm! I'm not even sure if I'm hungry now; I'll decide once Marty wakes up whether I want some food or just something to drink. I am looking forward to a much better day!
I forgot to mention in yesterday's entry that during one of my brief periods of wakefulness my volunteer, Tim, stopped by. He sat on the bed and chatted for a little while (after making sure that I wanted him to stay), until I told him I felt another wave of sleepiness coming on. I had totally forgotten about it until after I finished writing last night--I guess it was kind of dreamlike.
I still have some pain in my side, but it's not intense, so it's beginning to look like a pulled muscle rather than a cracked rib (which takes weeks to heal). I've taken hardly any morphine (I think one small dose last evening) and seem to be breathing all right and just generally feeling better. In the midst of feeling so awful yesterday I was too weak even to make it to the bathroom so I just peed onto one of the disposable pads. Lauren is supposed to be bringing a bedpan so we'll be prepared the next time this happens, but I've been making it to the bathroom on my own since yesterday afternoon.
It looks like the oxygen guy was right--with the humidity dial turned down, the bi-pap worked fine and didn't fill with water last night. I really wasn't sure if he knew what he was talking about but figured I had to give it a try.
Except for some cinnamon raisin toast which Diana made me last night, I didn't eat at all yesterday. I kept drinking because I was thirsty, which is important, but skipping a few meals won't do me any harm! I'm not even sure if I'm hungry now; I'll decide once Marty wakes up whether I want some food or just something to drink. I am looking forward to a much better day!
Monday, June 15, 2009
A nightmare of a night
If it hadn't been for Marty being here to confirm it, I would have said that a lot of last night was "just" a nightmare, but Marty says it happened pretty much as I remember it. I fell asleep quite early (not putting on the mask from my bi-pap machine), and some time thereafter woke up gasping for breath and feeling that my chest was caving in. I screamed for Marty (he was working in the dining room) and he quickly came in, helped me to take some more morphine (I was still having a lot of pain in my side), and to get the bi-pap mask on. I was able to get back to sleep, but it happened several times more during the night--the awful feeling of panic at not being able to breathe, calling for Marty, and him calming me down.
Lauren arrived at nine when I was still sleeping (she had another nurse, Kelly, with her). There was a lot of water in the bi-pap hose, which causes it to make a very unpleasant gurgling sound--I pulled it off and a lot of water spilled out onto the bed. I was very out of it and disoriented--Lauren said that I had probably taken too much morphine (which I'd done to try to get the pain under control), and she recommended that I take less, and take ativan in between morphine doses rather than at the same time. Actually, I haven't taken any morphine all day, which makes me feel hopeful that the problem is a muscle pull and not a cracked rib.
At one point the guy from the oxygen company came. We've been having a lot of trouble with the new equipment: the big liquid oxygen tank in the kitchen has been leaking water all over the floor (it turns out there was supposed to be a bottle for this excess water to flow into, which was missing). In addition, the hose on the bi-pap (which is the same model as the one I had from the other company) has been filling with water every night (the old one occasionally got some water in the hose, maybe every four or five days). The guy turned down the amount of humidity and said that should help, but I'm sceptical--I guess I'll know better tomorrow morning.
I was very thirsty but not at all hungry, so Lauren got me something to drink, and I ate a piece of matzo so I could take some pills (my Celebrex, for one, is n0t supposed to be taken on an empty stomach), and after she and Kelly left I went back to sleep. I've been sleeping most of the day--I was awake briefly when Laurel came around eleven, and again around three when a new back-up PCA, Diana (pronounced "DEE-anna"), arrived. Marty was going out to pick up a speaker at the airport for a meeting this evening, and then go to the meeting, so he's not expected back until ten or so.
I woke up finally, feeling refreshed, around seven, still thirsty but not hungry, had some more to drink, and eventually had some whole wheat cinnamon raisin toast (again, because I needed something in my stomach to take medicine). Diana is very pleasant company, and we've been sitting and talking and discovering some interesting connections in our lives. She says she'll be glad to be another back-up person, so I think we're pretty safe about getting covered whatever hours we need covered.
Just sitting and typing is making me tired, so I think I'll end here and lie down and see if I can get more comfortable.
Lauren arrived at nine when I was still sleeping (she had another nurse, Kelly, with her). There was a lot of water in the bi-pap hose, which causes it to make a very unpleasant gurgling sound--I pulled it off and a lot of water spilled out onto the bed. I was very out of it and disoriented--Lauren said that I had probably taken too much morphine (which I'd done to try to get the pain under control), and she recommended that I take less, and take ativan in between morphine doses rather than at the same time. Actually, I haven't taken any morphine all day, which makes me feel hopeful that the problem is a muscle pull and not a cracked rib.
At one point the guy from the oxygen company came. We've been having a lot of trouble with the new equipment: the big liquid oxygen tank in the kitchen has been leaking water all over the floor (it turns out there was supposed to be a bottle for this excess water to flow into, which was missing). In addition, the hose on the bi-pap (which is the same model as the one I had from the other company) has been filling with water every night (the old one occasionally got some water in the hose, maybe every four or five days). The guy turned down the amount of humidity and said that should help, but I'm sceptical--I guess I'll know better tomorrow morning.
I was very thirsty but not at all hungry, so Lauren got me something to drink, and I ate a piece of matzo so I could take some pills (my Celebrex, for one, is n0t supposed to be taken on an empty stomach), and after she and Kelly left I went back to sleep. I've been sleeping most of the day--I was awake briefly when Laurel came around eleven, and again around three when a new back-up PCA, Diana (pronounced "DEE-anna"), arrived. Marty was going out to pick up a speaker at the airport for a meeting this evening, and then go to the meeting, so he's not expected back until ten or so.
I woke up finally, feeling refreshed, around seven, still thirsty but not hungry, had some more to drink, and eventually had some whole wheat cinnamon raisin toast (again, because I needed something in my stomach to take medicine). Diana is very pleasant company, and we've been sitting and talking and discovering some interesting connections in our lives. She says she'll be glad to be another back-up person, so I think we're pretty safe about getting covered whatever hours we need covered.
Just sitting and typing is making me tired, so I think I'll end here and lie down and see if I can get more comfortable.
Sunday, June 14, 2009
United Health Care capitulates!
I got a call a little while ago from Howie--all the United Health Care correspondence goes to him since he is the policy holder. He had a letter from United, which he hadn't yet opened, so I told him to open it and read it to me. After a lot of boiler-plate and blah, blah, blah, the key sentence read as follows: "Based on the information reviewed, I am pleased to inform you that these charges have been reprocessed for payment." Then there's "sincere apologies for your frustration and inconvenience while trying to resolve issues with your claims." It's a total victory!
He faxed a copy of the letter to me, and I sent an e-mail to the Globe reporter about it--I'm sure she'll want me to fax a copy to her. Tomorrow I'll call the first hospice program to let them know that they can now successfully bill for all the hours they provided services. I'm still glad that I switched programs, though, since I think I'm getting a higher level of care from the new program.
I'm still in quite a bit of pain from the coughing, and have been taking a lot of morphine. I spoke with Lauren on the phone earlier and she'll be here tomorrow morning for her regular appointment. I received a drug delivery on Friday from the new pharmacy; for some reason they sent only about a third of a bottle of morphine rather than the full bottle I'd been getting from the previous pharmacy. Lauren made sure that I had enough to get through till tomorrow, and said she would get it straightened out. Because I'm taking a lot more morphine than I usually do, I'm feeling quite high and keep drifting off to sleep. At one point I even had a very dramatic, although fleeting hallucination--Marty and I were doing the crossword puzzle and I turned my eyes away, and when I turned back for a split-second the letters were brilliant magenta!
Tim, my volunteer, is coming tomorrow morning, and during the day, when Marty will be out, Julie has arranged for a back-up PCA, Diana (pronounced Dee-Anna), since none of the regulars are available.
It's been quite grey all day (although no rain), and combined with feeling fairly lousy because of the pain in my side, we have decided not to go out. Right now I think it's time for another nap.
He faxed a copy of the letter to me, and I sent an e-mail to the Globe reporter about it--I'm sure she'll want me to fax a copy to her. Tomorrow I'll call the first hospice program to let them know that they can now successfully bill for all the hours they provided services. I'm still glad that I switched programs, though, since I think I'm getting a higher level of care from the new program.
I'm still in quite a bit of pain from the coughing, and have been taking a lot of morphine. I spoke with Lauren on the phone earlier and she'll be here tomorrow morning for her regular appointment. I received a drug delivery on Friday from the new pharmacy; for some reason they sent only about a third of a bottle of morphine rather than the full bottle I'd been getting from the previous pharmacy. Lauren made sure that I had enough to get through till tomorrow, and said she would get it straightened out. Because I'm taking a lot more morphine than I usually do, I'm feeling quite high and keep drifting off to sleep. At one point I even had a very dramatic, although fleeting hallucination--Marty and I were doing the crossword puzzle and I turned my eyes away, and when I turned back for a split-second the letters were brilliant magenta!
Tim, my volunteer, is coming tomorrow morning, and during the day, when Marty will be out, Julie has arranged for a back-up PCA, Diana (pronounced Dee-Anna), since none of the regulars are available.
It's been quite grey all day (although no rain), and combined with feeling fairly lousy because of the pain in my side, we have decided not to go out. Right now I think it's time for another nap.
Saturday, June 13, 2009
After a day that started out so good...
Today was the easiest morning I have had in quite a while. Marie, the chaplain, had said she'd come by around nine-thirty, with pastries from the Quabrada Bakery. For the first time in days, it was nice and sunny, so Marty set up my chair out on the porch and I sat reading the paper and waiting for her to arrive. I was coughing a little but not too badly. Marie arrived around ten, bringing an assortment of goodies (I had a pumpkin muffin and Marty had a blueberry muffin). We sat and talked for close to two hours, about all kinds of things, including some of the logistics of the "celebration of life" event, the status of our trip to New York, and how we are both managing all the stress and difficulties. She's coming back next Friday morning, and we'll supply the refreshments this time--bagels and cream cheese and lox.
I came up with the idea of finding out whether there were other people who might be available to stop by for breakfast, as having company definitely seemed to improve what is usually the worst part of the day. After Marie left, we listened to "Wait, Wait, Don't Tell Me" on NPR, and then Marty went out for a meeting. I was feeling quite good and we decided that when he got back we'd go out somewhere for dinner.
Some time during the afternoon I started doing a lot more coughing, and this time it triggered a really sharp pain in my ribs on the left side. Eventually I realized I should take some morphine, which eased it up some, but it is still pretty intense. I'll see if I'll be able to sleep with it, but I may end up calling hospice if it stays this intense. It's very discouraging to be experiencing pain at this point, since my major symptoms up till now have been exhaustion and difficulty breathing, but not pain.
We had dinner at Olivio's, a nice Italian restaurant in Arlington. I wasn't super hungry and was planning to order just two appetizers, until the waiter told us one of the specials was duck breast with vegetable risotto, so I ordered that and took half of it home for dinner tomorrow. It felt good to be sitting in a restaurant with Marty, doing such a nice, normal thing. But by the time we got home I was very tired and my side was hurting a lot.
I'm going to take some more morphine and see if I can sleep.
The weather forecast for tomorrow is for rain, but if there are periods of good weather we hope to get out for one of several possible events. But that's only if I can get this pain under control.
I came up with the idea of finding out whether there were other people who might be available to stop by for breakfast, as having company definitely seemed to improve what is usually the worst part of the day. After Marie left, we listened to "Wait, Wait, Don't Tell Me" on NPR, and then Marty went out for a meeting. I was feeling quite good and we decided that when he got back we'd go out somewhere for dinner.
Some time during the afternoon I started doing a lot more coughing, and this time it triggered a really sharp pain in my ribs on the left side. Eventually I realized I should take some morphine, which eased it up some, but it is still pretty intense. I'll see if I'll be able to sleep with it, but I may end up calling hospice if it stays this intense. It's very discouraging to be experiencing pain at this point, since my major symptoms up till now have been exhaustion and difficulty breathing, but not pain.
We had dinner at Olivio's, a nice Italian restaurant in Arlington. I wasn't super hungry and was planning to order just two appetizers, until the waiter told us one of the specials was duck breast with vegetable risotto, so I ordered that and took half of it home for dinner tomorrow. It felt good to be sitting in a restaurant with Marty, doing such a nice, normal thing. But by the time we got home I was very tired and my side was hurting a lot.
I'm going to take some more morphine and see if I can sleep.
The weather forecast for tomorrow is for rain, but if there are periods of good weather we hope to get out for one of several possible events. But that's only if I can get this pain under control.
Friday, June 12, 2009
Mornings are always hard
It was another morning when I woke up coughing and feeling really lousy. Lauren arrived around nine, with another nurse, Cher, and they helped me to feel more comfortable. Once I finish coughing I slowly begin to feel better, and by the time Lisa arrived to give me my massage at around eleven, I was feeling pretty good.
As always, the massage left me feeling relaxed and mellow. I thought I might sleep, but I rested for awhile, and then I heated up some Whole Foods leftovers from the other night. Marty was out, and Ann had called and said that she didn't think it was a good idea for her to come because she had a cold, so I was alone for part of the day. My friend Susan had said she was coming in the afternoon, so after I had some lunch I rested and napped a little until she arrived.
She brought some wonderful pastries from Whole Foods; she sat on my bed and we had the usual lapsang soochong tea that we both like, and snacked on pastries, and talked. She admired Oliver, who was looking much healthier than the last time she had seen him. He's gained back the weight he lost when he was at the worst of his thyroid disease, and all the hair has grown back on the big bald patch he had developed, and he is definitely looking very handsome. Susan's dog has been very sick and we talked about how only people who have animals understand how attached people can become to their pets. I know that when Gilbert was so sick two Christmases ago and the vet was preparing me that he might die, I was totally distraught, and I look at all the time since that he has been healthy as a gift. He is probably the sweetest cat I've ever had; he is so sensitive to my moods and when I'm feeling bad Gilbert is almost always cuddled up with me.
It's about eleven o'clock and I'm very tired. I think Marty and I will work on the Friday puzzle for awhile and then I'll see if I can get some sleep. I was up for awhile in the middle of the night last night listening to the rain--it was really pouring and it felt good to be lying snug in bed and hearing the storm. I think this spell of unseasonably cool weather is coming to an end--it would be nice to have a good weekend and maybe get out a little. And we really have to start planning the details of the trip to New York, or it's not going to happen.
As always, the massage left me feeling relaxed and mellow. I thought I might sleep, but I rested for awhile, and then I heated up some Whole Foods leftovers from the other night. Marty was out, and Ann had called and said that she didn't think it was a good idea for her to come because she had a cold, so I was alone for part of the day. My friend Susan had said she was coming in the afternoon, so after I had some lunch I rested and napped a little until she arrived.
She brought some wonderful pastries from Whole Foods; she sat on my bed and we had the usual lapsang soochong tea that we both like, and snacked on pastries, and talked. She admired Oliver, who was looking much healthier than the last time she had seen him. He's gained back the weight he lost when he was at the worst of his thyroid disease, and all the hair has grown back on the big bald patch he had developed, and he is definitely looking very handsome. Susan's dog has been very sick and we talked about how only people who have animals understand how attached people can become to their pets. I know that when Gilbert was so sick two Christmases ago and the vet was preparing me that he might die, I was totally distraught, and I look at all the time since that he has been healthy as a gift. He is probably the sweetest cat I've ever had; he is so sensitive to my moods and when I'm feeling bad Gilbert is almost always cuddled up with me.
It's about eleven o'clock and I'm very tired. I think Marty and I will work on the Friday puzzle for awhile and then I'll see if I can get some sleep. I was up for awhile in the middle of the night last night listening to the rain--it was really pouring and it felt good to be lying snug in bed and hearing the storm. I think this spell of unseasonably cool weather is coming to an end--it would be nice to have a good weekend and maybe get out a little. And we really have to start planning the details of the trip to New York, or it's not going to happen.
Thursday, June 11, 2009
A rough start to a pretty good day
Yesterday after acupuncture I slept for an hour and a half on the daybed in the office, then came back to bed and ended up sleeping most of the afternoon and evening, and still slept most of the night as well. But, like most mornings, I spent most of the morning coughing and feeling quite miserable. But things definitely got better as the day went on.
Laurel arrived around eleven, and we were talking about her going out to bring back something good for lunch. She suggested the burgers at Krazy Karry's in Arlington Center--oddly, I had been thinking about burgers last night. Marty liked the idea too, so I had an enormous lunch of a burger with mushrooms, onions, and cheese, along with french fries and cole slaw. I definitely won't be hungry for dinner, but I know what I will be having for dessert. My friend Betty was here earlier, and brought homemade biscuits (I'm still on my quest for the ultimate biscuit), along with strawberries and whipped cream, so I will have some real strawberry shortcake! Betty also brought a bouquet of huge pink peonies from her garden, along with some purple flowers (she told me the name but I can't remember). Pink and purple are my favorite colors.
Betty interviewed me for an update of her social work book--years ago, she used to have me come speak to her class at Bridgewater State College every semester, and it's good to be back in touch with her. Next week Bob Whitaker is interviewing me for his new book. Using my brain feels good and gets me into a much better frame of mind, not focusing on being so sick and so weak.
After she left, I rested for a bit and then felt strong enough to take a shower, and Susan combed my hair. There was a funny minute when I was trying to get into my nightgown--my skin was still wet and the nightgown bunched up and I had to call for help--"I'm all tangled." Susan got me straightened out but we were both giggling--it must have looked pretty funny.
Marty definitely does still want to go to New York--we're just going to have to figure out another centerpiece for the trip, now that "Guys and Dolls" is out. There are so many things to do there that I'm sure we'll find something good, but I'm still disappointed.
Laurel arrived around eleven, and we were talking about her going out to bring back something good for lunch. She suggested the burgers at Krazy Karry's in Arlington Center--oddly, I had been thinking about burgers last night. Marty liked the idea too, so I had an enormous lunch of a burger with mushrooms, onions, and cheese, along with french fries and cole slaw. I definitely won't be hungry for dinner, but I know what I will be having for dessert. My friend Betty was here earlier, and brought homemade biscuits (I'm still on my quest for the ultimate biscuit), along with strawberries and whipped cream, so I will have some real strawberry shortcake! Betty also brought a bouquet of huge pink peonies from her garden, along with some purple flowers (she told me the name but I can't remember). Pink and purple are my favorite colors.
Betty interviewed me for an update of her social work book--years ago, she used to have me come speak to her class at Bridgewater State College every semester, and it's good to be back in touch with her. Next week Bob Whitaker is interviewing me for his new book. Using my brain feels good and gets me into a much better frame of mind, not focusing on being so sick and so weak.
After she left, I rested for a bit and then felt strong enough to take a shower, and Susan combed my hair. There was a funny minute when I was trying to get into my nightgown--my skin was still wet and the nightgown bunched up and I had to call for help--"I'm all tangled." Susan got me straightened out but we were both giggling--it must have looked pretty funny.
Marty definitely does still want to go to New York--we're just going to have to figure out another centerpiece for the trip, now that "Guys and Dolls" is out. There are so many things to do there that I'm sure we'll find something good, but I'm still disappointed.
A big disappointment
[Actually written and posted about 3 A.M. Thursday morning]
Having slept almost the entire afternoon and evening, it's now about three A.M., and after about two hours sleep it looks like I'm awake for awhile. I had acupuncture at three and when Anne left I drifted pleasantly for awhile, not sure if I would actually fall asleep, but then did and slept till five thirty. Susan had arrived while I was in with Anne, did some straightening up, and then left a note that she had to leave by five, so I never saw her. Marty was out for an evening meeting, but it didn't much matter as I slept almost the whole time till he got back around ten.
When I was reading the Times in the morning, I saw a story about the aftermath of the Tony Awards, which were held last week, and as a result of not winning any awards, several shows had posted closing notices, including "Guys and Dolls," which is closing this coming Sunday! Of course, both Marty and I were upset, as seeing this show was the main reason for our New York trip. I'm not sure if there's even any point in going now.
I didn't have a whole lot of energy yesterday, after a rough morning with a lot of coughing and the resulting tiredness. My other new volunteer, Caren, came in the late morning, and felt quite comfortable sitting on the bed (although I offered her a chair) and we talked for quite awhile. Both she and Tim look like they are going to keep coming, unlike the volunteers I had in the other program, who never seemed to work out.
The last few days have been cool and drizzly, much more like April than June. When Ken was here on Monday I sat outside, but it's been too cool to do that since then. It's supposed to be nice over the weekend. I really should take more advantage of my porch, which is just steps from my bed, and is such a lovely spot with all the hanging baskets and window boxes of flowers.
I'm not sure if I'm going to be able to sleep more tonight as I basically got a full night's sleep over the afternoon and evening. Maybe I'll try reading--it's been hard for me to get absorbed in a book recently, but when Lauren was organizing the stuff behind the bed the other day she found several that I had put aside as possibly interesting.
Having slept almost the entire afternoon and evening, it's now about three A.M., and after about two hours sleep it looks like I'm awake for awhile. I had acupuncture at three and when Anne left I drifted pleasantly for awhile, not sure if I would actually fall asleep, but then did and slept till five thirty. Susan had arrived while I was in with Anne, did some straightening up, and then left a note that she had to leave by five, so I never saw her. Marty was out for an evening meeting, but it didn't much matter as I slept almost the whole time till he got back around ten.
When I was reading the Times in the morning, I saw a story about the aftermath of the Tony Awards, which were held last week, and as a result of not winning any awards, several shows had posted closing notices, including "Guys and Dolls," which is closing this coming Sunday! Of course, both Marty and I were upset, as seeing this show was the main reason for our New York trip. I'm not sure if there's even any point in going now.
I didn't have a whole lot of energy yesterday, after a rough morning with a lot of coughing and the resulting tiredness. My other new volunteer, Caren, came in the late morning, and felt quite comfortable sitting on the bed (although I offered her a chair) and we talked for quite awhile. Both she and Tim look like they are going to keep coming, unlike the volunteers I had in the other program, who never seemed to work out.
The last few days have been cool and drizzly, much more like April than June. When Ken was here on Monday I sat outside, but it's been too cool to do that since then. It's supposed to be nice over the weekend. I really should take more advantage of my porch, which is just steps from my bed, and is such a lovely spot with all the hanging baskets and window boxes of flowers.
I'm not sure if I'm going to be able to sleep more tonight as I basically got a full night's sleep over the afternoon and evening. Maybe I'll try reading--it's been hard for me to get absorbed in a book recently, but when Lauren was organizing the stuff behind the bed the other day she found several that I had put aside as possibly interesting.
Tuesday, June 9, 2009
A surprising amount of energy and some interesting plans
To my surprise, I've had more energy today than I have in quite awhile. I haven't been sleepy, and I've been out of bed a number of times--never for very long, but without collapsing back into bed, which is the way it's been for awhile.
Laurel called first thing this morning to say that she was feeling sick and wasn't going to be able to come. Marty had a doctor's appointment, and fortunately Judy, who has the most flexible schedule of all my PCA's, was available. Judy has a nice, bouncy kind of energy and enthusiasm that makes her enjoyable to be around.
I had an early breakfast (because I essentially woke Marty) of tea and biscuits, and Judy made me a nice lunch--a chicken salad sandwich on good whole grain bread. Marty is going to stop at Whole Foods to get something good for dinner. Judy left around two, but I was alone for just a short while because Katrina, the new social worker, was due around three.
Katrina, Julie, and I talked about a bunch of things. Katrina said there were a lot of things she could do to facilitate the trip to New York, the most important of which was that she would arrange with the nearest hospice to serve as back up. She also said that once we knew what hotel we'd be staying at she could call the concierge to see what could be arranged in terms of wheelchair transportation at the theater and other logistics (although I'm planning on bringing the scooter, I think it would be easier to go to the theater without it).
We also talked about cremation, and I sent an e-mail to Mount Auburn Cemetery, which also does cremations, and I'm going to make an appointment with the cremation service I called the other day, to come and meet with us, and then we will pick one.
Julie and I told Katrina that there wouldn't be a funeral; we'd do what we did when Daddy died, which was to have a gathering several weeks later. Julie pointed out that, unlike Daddy's, an event for me would be huge, and she was not looking forward to planning it. I then said something I'd suggested much earlier, which was to have it, instead, when I was still alive, which Julie especially liked. Katrina said she'd heard about people doing similar things, and it was one more thing that she'd be glad to help with. Of course, once we pick a date, I may or may not be there, but it would work either way. I'd like to have it at a nice hotel with some yummy nibbly things, wine, and some music. I'm not sure exactly what we'd call it, but I'm sure we'd think of something.
Susan arrived while Katrina was here, and got all yesterday's laundry folded and put away, and once Katrina left, took up a job Laurel had started yesterday, going through the piles of magazines that are stacked up on the back of the bookcase/headboard. The cats are often sitting up there and every now and then there's an "avalanche" of magazines, usually onto Marty's head! Now Susan is gone, I'm resting, and feeling pleasantly surprised at how a day which started out with me in such a strange mood has turned out so well.
Laurel called first thing this morning to say that she was feeling sick and wasn't going to be able to come. Marty had a doctor's appointment, and fortunately Judy, who has the most flexible schedule of all my PCA's, was available. Judy has a nice, bouncy kind of energy and enthusiasm that makes her enjoyable to be around.
I had an early breakfast (because I essentially woke Marty) of tea and biscuits, and Judy made me a nice lunch--a chicken salad sandwich on good whole grain bread. Marty is going to stop at Whole Foods to get something good for dinner. Judy left around two, but I was alone for just a short while because Katrina, the new social worker, was due around three.
Katrina, Julie, and I talked about a bunch of things. Katrina said there were a lot of things she could do to facilitate the trip to New York, the most important of which was that she would arrange with the nearest hospice to serve as back up. She also said that once we knew what hotel we'd be staying at she could call the concierge to see what could be arranged in terms of wheelchair transportation at the theater and other logistics (although I'm planning on bringing the scooter, I think it would be easier to go to the theater without it).
We also talked about cremation, and I sent an e-mail to Mount Auburn Cemetery, which also does cremations, and I'm going to make an appointment with the cremation service I called the other day, to come and meet with us, and then we will pick one.
Julie and I told Katrina that there wouldn't be a funeral; we'd do what we did when Daddy died, which was to have a gathering several weeks later. Julie pointed out that, unlike Daddy's, an event for me would be huge, and she was not looking forward to planning it. I then said something I'd suggested much earlier, which was to have it, instead, when I was still alive, which Julie especially liked. Katrina said she'd heard about people doing similar things, and it was one more thing that she'd be glad to help with. Of course, once we pick a date, I may or may not be there, but it would work either way. I'd like to have it at a nice hotel with some yummy nibbly things, wine, and some music. I'm not sure exactly what we'd call it, but I'm sure we'd think of something.
Susan arrived while Katrina was here, and got all yesterday's laundry folded and put away, and once Katrina left, took up a job Laurel had started yesterday, going through the piles of magazines that are stacked up on the back of the bookcase/headboard. The cats are often sitting up there and every now and then there's an "avalanche" of magazines, usually onto Marty's head! Now Susan is gone, I'm resting, and feeling pleasantly surprised at how a day which started out with me in such a strange mood has turned out so well.
Frustrated and angry
Now it's me who couldn't sleep through the night--I've been up for a couple of hours and it's only seven o'clock. I've been playing around on the computer (Julie lent me hers while Jim is trying to make my antique computer run a little faster) and reading e-mail. I'm very hungry and I was trying not to wake Marty, and I know it's too much for me to make myself some breakfast--I would just exhaust myself, which leads to these feelings of frustration and anger. It is ridiculous to be this weak! I realize my world has narrowed more and more--there are days I never get as far as the kitchen.
And yet we are talking about this trip to New York as if it is a realistic possibility. I know if we do it we will make wonderful memories. I'm sure it will be my last trip. We need to work out the logistics carefully, and even so, I could end up getting overtired and not being able to do some of the things we planned. The two absolutes are "Guys and Dolls" and New York cheesecake!
Some things we need to look into are the costs of hiring a car service vs. driving (and paying for parking), the cost and availability of the theater tickets, and hotel rooms. I'd do Priceline for the hotel, which I've always been very successful at, and I'm sure I could get a good deal. We'd take the scooter, I assume, and of course all my oxygen paraphernalia. One thing we need to do is test out the new oxygen concentrator, which is a totally different model from the one we've had such bad luck with. The oxygen guy explained it to Marty but I'm sure we won't really understand it till we take it for a test drive, so to speak.
Marty is up now so I guess I'm going to get my breakfast soon. I feel a bit guilty about waking him but at least I waited till after seven. I didn't mean to wake him but when I was trying to switch over from the bi-pap to the nasal cannula I got the tubing all tangled and got a little panicky, started cursing, and had to turn on the light to get everything figured out.
And yet we are talking about this trip to New York as if it is a realistic possibility. I know if we do it we will make wonderful memories. I'm sure it will be my last trip. We need to work out the logistics carefully, and even so, I could end up getting overtired and not being able to do some of the things we planned. The two absolutes are "Guys and Dolls" and New York cheesecake!
Some things we need to look into are the costs of hiring a car service vs. driving (and paying for parking), the cost and availability of the theater tickets, and hotel rooms. I'd do Priceline for the hotel, which I've always been very successful at, and I'm sure I could get a good deal. We'd take the scooter, I assume, and of course all my oxygen paraphernalia. One thing we need to do is test out the new oxygen concentrator, which is a totally different model from the one we've had such bad luck with. The oxygen guy explained it to Marty but I'm sure we won't really understand it till we take it for a test drive, so to speak.
Marty is up now so I guess I'm going to get my breakfast soon. I feel a bit guilty about waking him but at least I waited till after seven. I didn't mean to wake him but when I was trying to switch over from the bi-pap to the nasal cannula I got the tubing all tangled and got a little panicky, started cursing, and had to turn on the light to get everything figured out.
Monday, June 8, 2009
A pretty good day
Even after two long naps yesterday, I slept through the night. Unfortunately, Marty had a bad night and he was up watching TV and working on the computer in the middle of the night, but eventually we both got back to sleep. I woke up for good around seven, in a bad mood after a lot of confusing dreams of which I could remember only fragments. I wanted my breakfast, but Marty was still sleeping and I wanted to let him sleep since he'd been up during the night.
Lauren arrived at nine. I like this system (which was Julie's idea), as mornings are my worst times and she is very helpful at getting me settled. I didn't have breakfast until after she left, around ten--Marty reheated the omelet, potatoes, and sausage from yesterday, plus some biscuits he had gotten at KFC (I'm still on this biscuit kick). Because breakfast was so big and so late I haven't had any lunch, just lots of liquids (seltzer, iced green tea, and ginger ale), and I'm going to have a chicken pie (another favorite) for dinner. I asked Marty to bring me a pastry treat and he brought an elaborate mocha cupcake that I think I will slice in half as it's very big and very rich (and looks extremely yummy).
Laurel came about eleven and I asked her to neaten up so the housecleaners would have clear surfaces to work on, and to get fresh sheets on my bed. I like having Laurel here. Like Judy, yesterday, she seems to pick up on when I feel like talking and when I'd rather be left alone. My new volunteer, Tim, came in the late morning and I decided I wanted to sit out on the porch in my wonderful chair. It is a lovely day, just a little bit cool, so I threw a light blanket over me. Tim and I talked about a bunch of things, and he said he'd be glad to come back next Monday, or even sooner if I wanted. But I'm also having a second volunteer, Karen, who is coming on Wednesday, so I said next week would be fine. This afternoon I got a call from another volunteer, Barbara, who said that although she doesn't do Reiki she does something similar, and we made an appointment for her to come next week. I'm curious to see what she does and whether it has anything like the effect that Angela's treatment had on me.
After Tim left I was very sleepy and thought I would take a nap, but I lay with closed eyes for awhile and never actually got to sleep, but fell into a very restful reverie for awhile which was almost as good as a nap.
It was very exciting to see a comment the other day from someone who read about my blog on a palliative care blog, and when I went to read that blog she had really complimentary things to say about mine (http://dying.about.com/b/). Just as I spent much of my career promoting dialogue between mental health professionals and people at the receiving end of treatment, now I seem to be doing something similar for hospice professionals and hospice patients. When I first started this blog, it was mainly to keep the people in my life up to date on how I was doing, but now I think I have more readers who don't know me than people who do.
Lauren arrived at nine. I like this system (which was Julie's idea), as mornings are my worst times and she is very helpful at getting me settled. I didn't have breakfast until after she left, around ten--Marty reheated the omelet, potatoes, and sausage from yesterday, plus some biscuits he had gotten at KFC (I'm still on this biscuit kick). Because breakfast was so big and so late I haven't had any lunch, just lots of liquids (seltzer, iced green tea, and ginger ale), and I'm going to have a chicken pie (another favorite) for dinner. I asked Marty to bring me a pastry treat and he brought an elaborate mocha cupcake that I think I will slice in half as it's very big and very rich (and looks extremely yummy).
Laurel came about eleven and I asked her to neaten up so the housecleaners would have clear surfaces to work on, and to get fresh sheets on my bed. I like having Laurel here. Like Judy, yesterday, she seems to pick up on when I feel like talking and when I'd rather be left alone. My new volunteer, Tim, came in the late morning and I decided I wanted to sit out on the porch in my wonderful chair. It is a lovely day, just a little bit cool, so I threw a light blanket over me. Tim and I talked about a bunch of things, and he said he'd be glad to come back next Monday, or even sooner if I wanted. But I'm also having a second volunteer, Karen, who is coming on Wednesday, so I said next week would be fine. This afternoon I got a call from another volunteer, Barbara, who said that although she doesn't do Reiki she does something similar, and we made an appointment for her to come next week. I'm curious to see what she does and whether it has anything like the effect that Angela's treatment had on me.
After Tim left I was very sleepy and thought I would take a nap, but I lay with closed eyes for awhile and never actually got to sleep, but fell into a very restful reverie for awhile which was almost as good as a nap.
It was very exciting to see a comment the other day from someone who read about my blog on a palliative care blog, and when I went to read that blog she had really complimentary things to say about mine (http://dying.about.com/b/). Just as I spent much of my career promoting dialogue between mental health professionals and people at the receiving end of treatment, now I seem to be doing something similar for hospice professionals and hospice patients. When I first started this blog, it was mainly to keep the people in my life up to date on how I was doing, but now I think I have more readers who don't know me than people who do.
Sunday, June 7, 2009
Catching up on sleep
Friday night I had one of those anxiety attacks where I was just afraid to go to sleep, and ended up not even trying to sleep until about five A.M. So since then I've been doing lots of napping to make up for the missing sleep. I also feel much calmer, so I guess discharging all those negative feelings was a good thing.
I surprised Marty this morning by asking him if he wanted to go out for breakfast. He always thinks it's a good idea to get me out, even though it makes me tired. We went to the Arlington Diner, where I always order the same breakfast--a veggie omelet with cheddar cheese. It comes with those yummy greasy diner home fries, and I got a side order of sausages. Last time we were there I took home half an omelet in the hope it would reheat successfully, and we discovered that it did, so tomorrow's breakfast is in the fridge.
I slept through the night last night and have already taken two naps today. Marty went to help Donna with some things so he arranged for Judy to stay with me, as I am definitely getting too weak to be left alone for very long. When she arrived I was sleeping, and when I woke up we talked for awhile and I read the newspaper and then took another nap. I talked with Marty a little while ago and he is heading home soon.
I can definitely feel myself getting weaker--even a trip to the bathroom feels like an excursion. This morning when I got up I took the bi-pap mask off and somehow forgot to put on the nasal cannula, so when I got back to bed I was really gasping more than usual, and it took a minute or so to realize why. Once I got some oxygen on I was able to catch my breath, but I felt pretty stupid for forgetting.
When Katrina, the new social worker, was here the other day we talked with her about this idea we have about taking a trip to New York, and she was very supportive and said she could help with logistics. We have wanted to go see "Guys and Dolls" since a revival opened on Broadway. I know it would be an exhausting trip but there are ways of minimizing the stress. We could stay in a hotel for two nights, and go see the show the second night, so the first day would be just for resting. Then we could stay till check-out time so I'd have more time to rest before the car ride. Marty suggested that I could put the seat back and sleep as much as possible while he drove. I go back and forth about whether I'm really up to doing this, but it certainly would be memorable and exciting. The other thing we really want is some authentic New York cheesecake! When Katrina comes next week I think we'll discuss it further. As I get weaker, it becomes less likely that I'll be able to do these things, so if it doesn't happen soon it won't happen at all.
I surprised Marty this morning by asking him if he wanted to go out for breakfast. He always thinks it's a good idea to get me out, even though it makes me tired. We went to the Arlington Diner, where I always order the same breakfast--a veggie omelet with cheddar cheese. It comes with those yummy greasy diner home fries, and I got a side order of sausages. Last time we were there I took home half an omelet in the hope it would reheat successfully, and we discovered that it did, so tomorrow's breakfast is in the fridge.
I slept through the night last night and have already taken two naps today. Marty went to help Donna with some things so he arranged for Judy to stay with me, as I am definitely getting too weak to be left alone for very long. When she arrived I was sleeping, and when I woke up we talked for awhile and I read the newspaper and then took another nap. I talked with Marty a little while ago and he is heading home soon.
I can definitely feel myself getting weaker--even a trip to the bathroom feels like an excursion. This morning when I got up I took the bi-pap mask off and somehow forgot to put on the nasal cannula, so when I got back to bed I was really gasping more than usual, and it took a minute or so to realize why. Once I got some oxygen on I was able to catch my breath, but I felt pretty stupid for forgetting.
When Katrina, the new social worker, was here the other day we talked with her about this idea we have about taking a trip to New York, and she was very supportive and said she could help with logistics. We have wanted to go see "Guys and Dolls" since a revival opened on Broadway. I know it would be an exhausting trip but there are ways of minimizing the stress. We could stay in a hotel for two nights, and go see the show the second night, so the first day would be just for resting. Then we could stay till check-out time so I'd have more time to rest before the car ride. Marty suggested that I could put the seat back and sleep as much as possible while he drove. I go back and forth about whether I'm really up to doing this, but it certainly would be memorable and exciting. The other thing we really want is some authentic New York cheesecake! When Katrina comes next week I think we'll discuss it further. As I get weaker, it becomes less likely that I'll be able to do these things, so if it doesn't happen soon it won't happen at all.
Friday, June 5, 2009
A very strange, confusing day
I woke up way too early this morning and couldn't get back to sleep. I had Julie's computer but couldn't get onto the Internet with it, and I didn't know where Marty had put my computer. I was feeling very agitated and when Marty woke up I started crying and couldn't stop. I was coughing a lot so he helped me to take some cough medicine. I kept saying that I wanted to die and just kept getting more and more upset. Lauren came a little after nine and helped to calm me down. I had an awful headache, so she gave me some morphine and some ativan, and got me into a more comfortable position. She spent a lot of time here, and it felt reassuring that she was taking so much time and being so patient.
Later we had a visit from Marie, the chaplain, who I liked a lot. She, Marty, and I spent a long time talking about how I was feeling and how we could all support one another. She said she'd like to visit with us once a week if we wanted her to.
After a while I started feeling cabin fever, even though we'd just been out the other day, so Marty took me out to lunch, and when we came home I thought I would take a nap, but I haven't been able to fall asleep. Maybe I'll try again. I still feel very tearful and anxious--maybe just an emotional letdown from the excitement of the other day. I've always said that it's important to keep my emotions close to the surface and just let them out, so that's what I'm doing, even with these very negative ones.
Later we had a visit from Marie, the chaplain, who I liked a lot. She, Marty, and I spent a long time talking about how I was feeling and how we could all support one another. She said she'd like to visit with us once a week if we wanted her to.
After a while I started feeling cabin fever, even though we'd just been out the other day, so Marty took me out to lunch, and when we came home I thought I would take a nap, but I haven't been able to fall asleep. Maybe I'll try again. I still feel very tearful and anxious--maybe just an emotional letdown from the excitement of the other day. I've always said that it's important to keep my emotions close to the surface and just let them out, so that's what I'm doing, even with these very negative ones.
Wednesday, June 3, 2009
An exhausting, exciting day
[Actually written and posted Thursday, June 4th]
I woke up very early Wednesday morning, around five, then fell back to sleep till about nine. Lauren, the nurse from the new hospice program, had said she'd come by about then, and actually arrived about nine thirty. She had a lot of forms for me to fill out, and got the process started for getting everything switched over. The guy from the new oxygen provider will be here tomorrow to review all my equipment and arrange for new stuff to be delivered. And I will get a visit from a new volunteer on Monday. So that seems to be going smoothly. I hope will like the new people as much as I liked everyone from the old program.
Laurel was here most of the day. I was feeling very tired in the morning and forgot that Anne was coming to give me an acupuncture treatment until she arrived at noon, when I was half asleep. I lay down on the daybed in the office and, as usual, acupuncture put me into a very relaxed state, and when Anne left I fell asleep for a short while, waking up feeling much more alert and energetic. Laurel said she could notice the difference.
I wasn't hungry, so didn't have any lunch, but I was quite thirsty so just kept drinking ginger ale and iced tea. In the late afternoon, Laurel helped me to get dressed in a simple dark brown jersey dress with a iridescent shawl, and purple strappy high heeled sandals. (Since I ride around in the scooter, I can wear high heels without having to worry about walking in them!) Laurel combed my hair and I put on my jewelry, including a necklace Evelyn made for me from a bunch of single earrings that I had lost the mates to.
The limo arrived on schedule--very long, complete with a uniformed driver. Julie and Marty took pictures of us all posed in front and sitting inside. The scooter got loaded into the trunk (I made sure this time that I had the key!) and we were off. As expected, the kids found it very exciting to be riding in a limo, and were having fun waving at people as we rode by.
The event was held at the Seaport Hotel in the new Waterfront District. There must have been about two hundred people there, but I immediately was greeted by a number of people I knew, and we were set up at a table right in front just for us. There was a buffet dinner and Marty got me a plate of food. Several awards were given, and mine was the last. It was presented by the Commissioner of Mental Health, who talked about the changes that had come about in the mental health system, largely through my efforts. Although everyone else had spoken from the podium, a microphone was brought to me so I could speak from my seat. (I didn't realize it but Julie called Florence and put the phone right in front of me so Florence heard my speech.) I didn't have any notes, but I talked about how, when I first started doing advocacy, people with psychiatric diagnoses were not seen as able to speak in their own interests, but now they are involved not only in their own treatment, but in all aspects of the mental health system. I talked about the importance of rights and the United Nations Convention on the Rights of People with Disabilities, and how important that was in changing the situation of people with all kinds of disabilities. I was able to get through the talk almost without a break (I think I started to cough once), but when I was done I was exhausted, and I was glad the evening was over.
The driver had left Julie his number so she could tell him when to pick us up, and he arrived quickly. By the time we got home I was exhausted, and needed help getting into the house and into bed, but once I was lying down I felt a lot better, and I was happy that I haven't been extraordinarily tired today. I've taken it very easy, and Lisa came and gave me a massage, which also helped me to feel relaxed. I've also napped a bit today.
Also today we got a visit from Katrina, the social worker for the new hospice program, who said she would be visiting about once a week (unless we didn't want her that often), and she is also arranging for the chaplain, Marie (or maybe it's Maria) to come see me.
I hope after a good night's sleep I'll feel even stronger tomorrow.
I woke up very early Wednesday morning, around five, then fell back to sleep till about nine. Lauren, the nurse from the new hospice program, had said she'd come by about then, and actually arrived about nine thirty. She had a lot of forms for me to fill out, and got the process started for getting everything switched over. The guy from the new oxygen provider will be here tomorrow to review all my equipment and arrange for new stuff to be delivered. And I will get a visit from a new volunteer on Monday. So that seems to be going smoothly. I hope will like the new people as much as I liked everyone from the old program.
Laurel was here most of the day. I was feeling very tired in the morning and forgot that Anne was coming to give me an acupuncture treatment until she arrived at noon, when I was half asleep. I lay down on the daybed in the office and, as usual, acupuncture put me into a very relaxed state, and when Anne left I fell asleep for a short while, waking up feeling much more alert and energetic. Laurel said she could notice the difference.
I wasn't hungry, so didn't have any lunch, but I was quite thirsty so just kept drinking ginger ale and iced tea. In the late afternoon, Laurel helped me to get dressed in a simple dark brown jersey dress with a iridescent shawl, and purple strappy high heeled sandals. (Since I ride around in the scooter, I can wear high heels without having to worry about walking in them!) Laurel combed my hair and I put on my jewelry, including a necklace Evelyn made for me from a bunch of single earrings that I had lost the mates to.
The limo arrived on schedule--very long, complete with a uniformed driver. Julie and Marty took pictures of us all posed in front and sitting inside. The scooter got loaded into the trunk (I made sure this time that I had the key!) and we were off. As expected, the kids found it very exciting to be riding in a limo, and were having fun waving at people as we rode by.
The event was held at the Seaport Hotel in the new Waterfront District. There must have been about two hundred people there, but I immediately was greeted by a number of people I knew, and we were set up at a table right in front just for us. There was a buffet dinner and Marty got me a plate of food. Several awards were given, and mine was the last. It was presented by the Commissioner of Mental Health, who talked about the changes that had come about in the mental health system, largely through my efforts. Although everyone else had spoken from the podium, a microphone was brought to me so I could speak from my seat. (I didn't realize it but Julie called Florence and put the phone right in front of me so Florence heard my speech.) I didn't have any notes, but I talked about how, when I first started doing advocacy, people with psychiatric diagnoses were not seen as able to speak in their own interests, but now they are involved not only in their own treatment, but in all aspects of the mental health system. I talked about the importance of rights and the United Nations Convention on the Rights of People with Disabilities, and how important that was in changing the situation of people with all kinds of disabilities. I was able to get through the talk almost without a break (I think I started to cough once), but when I was done I was exhausted, and I was glad the evening was over.
The driver had left Julie his number so she could tell him when to pick us up, and he arrived quickly. By the time we got home I was exhausted, and needed help getting into the house and into bed, but once I was lying down I felt a lot better, and I was happy that I haven't been extraordinarily tired today. I've taken it very easy, and Lisa came and gave me a massage, which also helped me to feel relaxed. I've also napped a bit today.
Also today we got a visit from Katrina, the social worker for the new hospice program, who said she would be visiting about once a week (unless we didn't want her that often), and she is also arranging for the chaplain, Marie (or maybe it's Maria) to come see me.
I hope after a good night's sleep I'll feel even stronger tomorrow.
Tuesday, June 2, 2009
Feeling a little stronger
Yesterday was an exhausting day, and I ended up taking a long nap during much of the late afternoon/early evening. I was coughing continuously and it really wore me out. But I'm coughing a lot less today and definitely feeling stronger. In a little while I'm going to take a shower, so I can spend all of tomorrow resting until it's time to get dressed to go out to the MAMH (Massachusetts Association for Mental Health) event.
When we left the hotel the other day, a little piece fell off the scooter and Marty was concerned that it wouldn't run, so this morning he got it out of the car and set it up and in fact it wouldn't turn on. We called the company and got someone who talked him through where the little piece (it was a fuse) went, and it's running fine. It would be a disaster if we needed it tomorrow and it wasn't working.
I can feel my heart working harder and harder as I struggle more with my breathing. I can see that, even on a day like today where I feel somewhat better, the general trend is downward. But I'm still able to do things that remind me of my old life. I wrote greetings that were read to attendees at two different conferences (in New York and Virginia)--the original idea was to make videotapes but I never got that together. My friend Betty just sent me a bunch of interview questions for a magazine article, about women and mental health, that I will try to work on in the next few days. And I want to give some thoughts to the brief remarks I will make at the ceremony tomorrow. All these things remind me that I am something besides an invalid.
When we left the hotel the other day, a little piece fell off the scooter and Marty was concerned that it wouldn't run, so this morning he got it out of the car and set it up and in fact it wouldn't turn on. We called the company and got someone who talked him through where the little piece (it was a fuse) went, and it's running fine. It would be a disaster if we needed it tomorrow and it wasn't working.
I can feel my heart working harder and harder as I struggle more with my breathing. I can see that, even on a day like today where I feel somewhat better, the general trend is downward. But I'm still able to do things that remind me of my old life. I wrote greetings that were read to attendees at two different conferences (in New York and Virginia)--the original idea was to make videotapes but I never got that together. My friend Betty just sent me a bunch of interview questions for a magazine article, about women and mental health, that I will try to work on in the next few days. And I want to give some thoughts to the brief remarks I will make at the ceremony tomorrow. All these things remind me that I am something besides an invalid.
Getting harder to breathe
I've been having more episodes recently where coughing spells send me into episodes of gasping, making it hard to catch my breath. I can feel my heart pounding, which starts a cycle of increasing anxiety and furthering the breathing difficulty. The hospice nurses have suggested increasing doses of ativan, morphine, and cough medicine, which seems to help. I was so tired from coughing all morning that I slept for about three hours in the afternoon, so now it's after midnight and I'm not quite ready to go to sleep. Still, today was definitely better than the weekend.
Kathy was here this morning to check me out (she had heard that I'd had a rough weekend). I probably should have talked to her about changing hospice providers, but it felt awkward, so I didn't. I did call Lauren, the manager at the new hospice, to initiate the changeover, and then got a call from the manager at the original program, who tried to guilt-trip me into staying, but of course ended by saying that they would be helpful in making the transition. I got another call from Lauren, who said that they would have their vendors deliver all the equipment before the old equipment was removed, but that everything should be shifted over by Wednesday. And the old hospice called to remind me that I am still officially their patient, so that if I need any emergency services until then I should not hesitate to call.
Laurel was here a good part of the day and got all the laundry done. I haven't had any more episodes of incontinence, but I discussed it with the new hospice, and they said they would provide some incontinence supplies for me to try. It seems to happen when I start gasping and lose the ability to tighten my muscles.
I've been feeling blue and scared. Kathy said that these episodes of gasping and heart pounding are an indication that my heart isn't getting enough oxygen, so I worry about my heart just giving out. It is definitely clear that I'm continuing to get weaker. I want to be able to continue to go out and do enjoyable things, despite the results of expending the extra energy.
Oddly, in the middle of everything today I got a call from a new case manager at United Health Care, who started to ask me about my symptoms and medications, but who clearly knew nothing about United's denial of my hospice care benefits. When I told her, she promised to look into it; I said that it was quite clear that the left hand didn't know what the right hand was doing!
Julie and I finally went through my bills and she took most of them to pay (I did the credit cards, which I already have on-line accounts set up for). We still have to pick a cremation provider--I want to have that pre-paid so there's no hassle when the time comes.
Kathy was here this morning to check me out (she had heard that I'd had a rough weekend). I probably should have talked to her about changing hospice providers, but it felt awkward, so I didn't. I did call Lauren, the manager at the new hospice, to initiate the changeover, and then got a call from the manager at the original program, who tried to guilt-trip me into staying, but of course ended by saying that they would be helpful in making the transition. I got another call from Lauren, who said that they would have their vendors deliver all the equipment before the old equipment was removed, but that everything should be shifted over by Wednesday. And the old hospice called to remind me that I am still officially their patient, so that if I need any emergency services until then I should not hesitate to call.
Laurel was here a good part of the day and got all the laundry done. I haven't had any more episodes of incontinence, but I discussed it with the new hospice, and they said they would provide some incontinence supplies for me to try. It seems to happen when I start gasping and lose the ability to tighten my muscles.
I've been feeling blue and scared. Kathy said that these episodes of gasping and heart pounding are an indication that my heart isn't getting enough oxygen, so I worry about my heart just giving out. It is definitely clear that I'm continuing to get weaker. I want to be able to continue to go out and do enjoyable things, despite the results of expending the extra energy.
Oddly, in the middle of everything today I got a call from a new case manager at United Health Care, who started to ask me about my symptoms and medications, but who clearly knew nothing about United's denial of my hospice care benefits. When I told her, she promised to look into it; I said that it was quite clear that the left hand didn't know what the right hand was doing!
Julie and I finally went through my bills and she took most of them to pay (I did the credit cards, which I already have on-line accounts set up for). We still have to pick a cremation provider--I want to have that pre-paid so there's no hassle when the time comes.
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