I didn't get a lot of sleep last night, but when I woke up I felt fairly sure I'd be able to manage a shower and getting dressed, so I could get out to the bank and to acupuncture. So now I have my bank accounts set up so that either Julie or I can sign checks, which will make things simpler if I'm feeling too sick to pay my bills (she is going to set me up to pay most of them on line in any case). And when I die all she'll need to do is take a copy of the death certificate into the bank to put the account into just her name--no lawyers or probate involved.
Acupuncture today has had a good effect--I was tired when we got home (we also stopped for lunch), and rested for a bit, but now I've been mostly out of bed for a couple of hours, which is always good for getting me the right kind of tired for drifting easily off to sleep. I've been plagued with nightmares the past few nights, although I was able to shake them off and get back to sleep pretty quickly. They were all doom scenarios--my bed catching fire, a stranger pulling me out of bed and choking me, stuff like that...no real problem to interpret what any of that means. At some point I am not going to be able to get out of that bed, and that's the simple truth.
The Hospice Foundation of America, has put a link to my blog on their page http://hfahospice.blogspot.com/, which I hope will draw more readers--each time I look, the number of registered readers is going up, and I know there are unregistered readers as well. I really do want to see people reading and commenting on this thing...it seems like useful work I can still do, even in my weakened state.
I'm still eating only a very limited diet, but it's all healthy stuff, and I expect I'll keep adding new foods a few at a time. Chicken pie, my all-time comfort food, is the main thing, and that's chicken and carrots and peas with some nice gravy and crust and no weird stuff. We went to a diner for lunch after acupuncture and I had a chicken salad sandwich with tomato on whole wheat bread. The important thing is to make sure not to upset my still somewhat delicate stomach (not my usual condition--I usually can eat just about anything).
I think, in fact, it's time to eat something now--probably some whole wheat pasta, and watch some TV. Obama is giving a news conference to try to get people behind his stimulus bill--the Republicans are acting like they forgot they lost the election! It should be interesting.
Monday, February 9, 2009
Sunday, February 8, 2009
Disappointment
I had high hopes for today...it was supposed to be warm and Marty wanted to take me out somewhere. But when I got up to have breakfast (tea and cereal) I ran out of energy just eating it, and didn't even have enough left to give Oliver his medicine and feed both cats...I called Marty and he came over and did that, and he's been here all day. We have just been lying in bed, did the Sunday Times crossword puzzle and read the paper and watched TV, and I gave in to the blues (which I don't do very often) and had a good cry.
Right now even sitting at the computer is wearing me out and I'll head back to bed in a few minutes. I hope I have enough energy to get to acupuncture tomorrow.
Although I know on an intellectual level that I'm going to continue to get weaker, the reality is still so hard to deal with.
Right now even sitting at the computer is wearing me out and I'll head back to bed in a few minutes. I hope I have enough energy to get to acupuncture tomorrow.
Although I know on an intellectual level that I'm going to continue to get weaker, the reality is still so hard to deal with.
Saturday, February 7, 2009
Feeling stronger
Today has been a good day. I'm back to eating some real food--still not my normal diet, but my old standby comfort foods, like baked potatoes, chicken pot pies, and tonight, blintzes with sour cream. (For those of you who don't know what a blintz is, my sympathies!) There's a local company that makes wonderful frozen chicken pot pies with no yuckie stuff--you even have to add your own veggies, as it's just big chunks of chicken with gravy and crust.
I've been out of bed quite a bit, although I get tired quickly and have to lie down after every little exertion. Tonight I'm planning to take a shower, which is both refreshing and exhausting, as Marty really wants to get me out of the house tomorrow, when it's supposed to hit 50 degrees! And Monday I'll need to go out again for acupuncture.
I am so lucky to have Marty in my life. When we met, I was an active person with a career that was still taking me around the world--I'm sure lots of guys would have bowed out when I turned into an invalid, but he has been a rock! We make each other laugh and that's probably the best medicine of all. We have a shared love of crossword puzzles, silly puns, music, good food, and good conversation...and best of all, he lives just a mile away.
I've been out of bed quite a bit, although I get tired quickly and have to lie down after every little exertion. Tonight I'm planning to take a shower, which is both refreshing and exhausting, as Marty really wants to get me out of the house tomorrow, when it's supposed to hit 50 degrees! And Monday I'll need to go out again for acupuncture.
I am so lucky to have Marty in my life. When we met, I was an active person with a career that was still taking me around the world--I'm sure lots of guys would have bowed out when I turned into an invalid, but he has been a rock! We make each other laugh and that's probably the best medicine of all. We have a shared love of crossword puzzles, silly puns, music, good food, and good conversation...and best of all, he lives just a mile away.
Friday, February 6, 2009
"On Our Own"
So many of the notes I've been getting mention "On Our Own," often saying how much people cherish their copies, or how hard they had to work to find one, that it's frustrating that NEC hasn't ever gotten out the word (except on the Website) that they are available. When the book went out of print in the U.S., people were importing copies from England, but then MIND (the British Mental Health Association--quite different from the U.S. one!) let it go out of print as well. Since I owned the American rights, NEC was able to publish a new American edition, but because they're not a recognized publisher, it doesn't show up on searches, except as "out of print." So it's been hard to spread the word that it can be bought at the National Empowerment Center Web store (www.power2u.org), and is very much in print.
Of all the editions, it's the one with my favorite cover--the only one, in my opinion, that really carries the spirit of the book. It's a painting by an artist (and psychiatric survivor), very artistically representing a woman in transition. The U.S. paperback edition, the one probably people have seen the most, carries exactly the wrong message--a faceless woman in the shadows. I had no say in any of the cover art except the NEC edition.
Of all the editions, it's the one with my favorite cover--the only one, in my opinion, that really carries the spirit of the book. It's a painting by an artist (and psychiatric survivor), very artistically representing a woman in transition. The U.S. paperback edition, the one probably people have seen the most, carries exactly the wrong message--a faceless woman in the shadows. I had no say in any of the cover art except the NEC edition.
Crashing
Wednesday was the worst day I've had in a long time--maybe ever. I was too weak to get out of bed, was hot and cold, and was incredibly sick to my stomach, without being able to throw up. Maybe I had a one-day flu or something on top of everything else. I finally managed to drink a few sips of tea in the mid-afternoon, and had sips of water and seltzer after that, but the mere thought of food made me cringe.
What made it worse was that Valerie and Steve were bringing dinner and we'd exchanged numerous happy e-mails planning the menu. Before they came, I told Marty that I didn't want to hear even the mention of food--the three of them could eat in the dining room, and they could come visit in my bedroom, but it was not the visit that any of us were expecting.
Julie came downstairs and called hospice and Kathy, my regular nurse, came to check things out. She gave me some morphine, which eases my breathing, but turns out to make the nausea worse--Julie called again, and they said to take some ativan to ease the nausea, and that did help. But the constant retching, and being hot and cold, were exhausting, and I kept drifting off to sleep (probably the best thing under the circumstances).
Yesterday I felt much better, just weak, and finally started eating--simple things like oatmeal, jello, ginger ale, and pasta, and today I feel back to where I was before this happened (and hungry, which is a good thing). It's 5 A.M. now and I've been up for about an hour--not surprising as I basically slept most of the last forty-eight! Eric and Laurie are visiting this afternoon, Ann will be here at eleven, and I made an appointment with the woman who is supposed to help me with my computer but I can't remember the time (I'll have to call her later and make sure I can fit her in). It's good that people will be here as Marty will be gone all day--he has to go help Donna with her car, among other things. He is terribly stressed out and I wish there were some way I could be less needy.
Anyhow, it's a relief to feel better, to get to the computer for the first time in days, and to discover that the blog has picked up even more readers.
What made it worse was that Valerie and Steve were bringing dinner and we'd exchanged numerous happy e-mails planning the menu. Before they came, I told Marty that I didn't want to hear even the mention of food--the three of them could eat in the dining room, and they could come visit in my bedroom, but it was not the visit that any of us were expecting.
Julie came downstairs and called hospice and Kathy, my regular nurse, came to check things out. She gave me some morphine, which eases my breathing, but turns out to make the nausea worse--Julie called again, and they said to take some ativan to ease the nausea, and that did help. But the constant retching, and being hot and cold, were exhausting, and I kept drifting off to sleep (probably the best thing under the circumstances).
Yesterday I felt much better, just weak, and finally started eating--simple things like oatmeal, jello, ginger ale, and pasta, and today I feel back to where I was before this happened (and hungry, which is a good thing). It's 5 A.M. now and I've been up for about an hour--not surprising as I basically slept most of the last forty-eight! Eric and Laurie are visiting this afternoon, Ann will be here at eleven, and I made an appointment with the woman who is supposed to help me with my computer but I can't remember the time (I'll have to call her later and make sure I can fit her in). It's good that people will be here as Marty will be gone all day--he has to go help Donna with her car, among other things. He is terribly stressed out and I wish there were some way I could be less needy.
Anyhow, it's a relief to feel better, to get to the computer for the first time in days, and to discover that the blog has picked up even more readers.
Tuesday, February 3, 2009
Struggling with decline
I think I've been on a plateau this last little while, but now it feels like things are starting to tend downwards again, and I'm having a lot of trouble with that. It means being even more dependent on people, which is hard. Today I'm really going to try to work with Ann on the bed mess--the housecleaners put stuff in neat, but meaningless stacks yesterday (while Marty and I were out at acupuncture and lunch), but some of those are now on the floor, gettting knocked off when I rolled over. I don't really remember going to sleep last night--I never put on my C-pap machine or even took off my glasses! (At some point in the middle of the night I awoke briefly and discovered I was still wearing them, but I didn't realize about the machine till the morning.)
I guess the time has come to move the computer into the bedroom and set it up on the little table that fits over my legs when I'm sitting up, but I don't want to do that until all the other stuff is off the bed. Organizing has never been my strongpoint, and now it seems more difficult than ever. I did pay my credit card bills on line yesterday (a few days before the due date), and yesterday I deposited Howie's check so I can mail the mortgage check today. I need to draw some money out of the retirement account, which I'm reluctant to do but is now clearly necessary.
If only everything weren't so hard! But there are practicalities that need to be dealt with. Jim Henderson finally has all the signed documents for the will and the trust, but he can't set up the trust until the mortgage guy lets me know the status of the refi, and he was sick last week. And I still have to do the prepaid cremation thing--another detail that seems easy, but is emotionally difficult. Right now I think I'll go have some breakfast and read the papers.
Marty is taking Oliver to the vet this morning--he's developed a big bald spot on his hip, and every now and then (like this morning) he lets out a loud, strangled cry that seems to indicate he's in some kind of pain. He's fourteen, which is getting up there for a cat, but I hope Dr. Levey can fix him up as I know it would be devastating for me if he were to die now...I just want him to outlive me. I'm sure Gilbert would be lost without him and I can't see myself dealing with a new cat at this point.
I guess the time has come to move the computer into the bedroom and set it up on the little table that fits over my legs when I'm sitting up, but I don't want to do that until all the other stuff is off the bed. Organizing has never been my strongpoint, and now it seems more difficult than ever. I did pay my credit card bills on line yesterday (a few days before the due date), and yesterday I deposited Howie's check so I can mail the mortgage check today. I need to draw some money out of the retirement account, which I'm reluctant to do but is now clearly necessary.
If only everything weren't so hard! But there are practicalities that need to be dealt with. Jim Henderson finally has all the signed documents for the will and the trust, but he can't set up the trust until the mortgage guy lets me know the status of the refi, and he was sick last week. And I still have to do the prepaid cremation thing--another detail that seems easy, but is emotionally difficult. Right now I think I'll go have some breakfast and read the papers.
Marty is taking Oliver to the vet this morning--he's developed a big bald spot on his hip, and every now and then (like this morning) he lets out a loud, strangled cry that seems to indicate he's in some kind of pain. He's fourteen, which is getting up there for a cat, but I hope Dr. Levey can fix him up as I know it would be devastating for me if he were to die now...I just want him to outlive me. I'm sure Gilbert would be lost without him and I can't see myself dealing with a new cat at this point.
Sunday, February 1, 2009
Okay...spirituality
I usually describe myself as "the least spiritual person" I know. I am a proud third-generation atheist (it was great to hear Obama include "non-believers" in his list of people of different spiritual persuasions). But recently a number of people have commented on my calmness and acceptance as spiritual marks. I suppose it's all in the eye of the beholder.
Before I came into hospice, when I was still thinking mainly in terms of cures and doctors and hospitals, I went through several periods of deep depression. I felt that I just wanted to die, without going through all the steps it takes to get there. I think the turning point was that wonderful doctor at Beth Israel in October (whose name I wish I could remember) who was the first person to honestly answer my question: "Without a lung transplant, what's going to happen to me?" I think most doctors would talk all around the question, but she looked me in the eyes and replied, "Let's face it, without a lung transplant you don't have a very long life expectancy." Some people might think this would crash all my hope--instead, it let me know exactly what I was dealing with. It led me to talk with the palliative care team and to referral to hospice. It took away all the dishonesty that so often surrounds people with serious illnesses.
I can see now that this is a process...that my body will know what to do. Already, I know there are some days I can barely venture out of bed. I suppose there will be more of them, and I need to work at getting stuff set up so I can do more in bed. When Ann comes on Tuesday we really have to work at getting the mess on the bed organized. I already have a storage box (which Julie found for me) to keep stuff like current books, magazines, and newspapers, grooming stuff like hand lotion, my glasses case, the TV remote, etc., but things do seem to get strewn all over. I also have a bed table (which Marty bought) where I can eat meals, set up the computer, pay bills, etc. It sounds a lot more organized than it is, but I really have to work at getting it that way before I find myself even less able to be out of bed.
The one day at a time stuff really makes sense. Today, I can already feel, will be a good day. There's the Sunday morning papers to look forward to, Marty coming so we can do the Sunday New York Times crossword, and Chris and Shery's coming and bringing lunch. Later, there's even the Super Bowl, although it's "just a game" without the Giants. So, there's lots to enjoy. I don't need gods or prayers to make it happen (although I accept gracefully whenever anyone offers to pray for me--it couldn't hurt!)
I do have a somewhat funny story about someone praying for me. A few weeks ago one of my housecleaners (they are a lovely crew of three Brazilian women) asked me in very broken English if she could pray for me. It took me a few minutes to even figure out what she was asking, but once I figured it out I said yes, thinking she would go to church and light a candle or something. I wouldn't have had any problem with that, but it was quite startling when, instead, she burst into loud, ecstatic, beseeching Portuguese, with frequent references to "Jesu Cristo" and practically a laying on of hands, which seemed to go on forever while I both writhed in embarrassment and tried to act appreciative! Fortunately, she hasn't asked again. That's the kind of spirituality I don't need!
But if someone says "You're in my prayers" (as Nancy, the chaplain, often does), or "I'll light a candle for you," or whatever, I try to take it in the spirit in which it was offered. I don't see the point in getting into an argument about it. I just go on firm in my own belief that, when I am ready, I will go back into the eternal sleep that ended with my birth and will resume with my death. Until then, I've got lots of things I want to do, and I'm going to try to do as many of them as I can.
Before I came into hospice, when I was still thinking mainly in terms of cures and doctors and hospitals, I went through several periods of deep depression. I felt that I just wanted to die, without going through all the steps it takes to get there. I think the turning point was that wonderful doctor at Beth Israel in October (whose name I wish I could remember) who was the first person to honestly answer my question: "Without a lung transplant, what's going to happen to me?" I think most doctors would talk all around the question, but she looked me in the eyes and replied, "Let's face it, without a lung transplant you don't have a very long life expectancy." Some people might think this would crash all my hope--instead, it let me know exactly what I was dealing with. It led me to talk with the palliative care team and to referral to hospice. It took away all the dishonesty that so often surrounds people with serious illnesses.
I can see now that this is a process...that my body will know what to do. Already, I know there are some days I can barely venture out of bed. I suppose there will be more of them, and I need to work at getting stuff set up so I can do more in bed. When Ann comes on Tuesday we really have to work at getting the mess on the bed organized. I already have a storage box (which Julie found for me) to keep stuff like current books, magazines, and newspapers, grooming stuff like hand lotion, my glasses case, the TV remote, etc., but things do seem to get strewn all over. I also have a bed table (which Marty bought) where I can eat meals, set up the computer, pay bills, etc. It sounds a lot more organized than it is, but I really have to work at getting it that way before I find myself even less able to be out of bed.
The one day at a time stuff really makes sense. Today, I can already feel, will be a good day. There's the Sunday morning papers to look forward to, Marty coming so we can do the Sunday New York Times crossword, and Chris and Shery's coming and bringing lunch. Later, there's even the Super Bowl, although it's "just a game" without the Giants. So, there's lots to enjoy. I don't need gods or prayers to make it happen (although I accept gracefully whenever anyone offers to pray for me--it couldn't hurt!)
I do have a somewhat funny story about someone praying for me. A few weeks ago one of my housecleaners (they are a lovely crew of three Brazilian women) asked me in very broken English if she could pray for me. It took me a few minutes to even figure out what she was asking, but once I figured it out I said yes, thinking she would go to church and light a candle or something. I wouldn't have had any problem with that, but it was quite startling when, instead, she burst into loud, ecstatic, beseeching Portuguese, with frequent references to "Jesu Cristo" and practically a laying on of hands, which seemed to go on forever while I both writhed in embarrassment and tried to act appreciative! Fortunately, she hasn't asked again. That's the kind of spirituality I don't need!
But if someone says "You're in my prayers" (as Nancy, the chaplain, often does), or "I'll light a candle for you," or whatever, I try to take it in the spirit in which it was offered. I don't see the point in getting into an argument about it. I just go on firm in my own belief that, when I am ready, I will go back into the eternal sleep that ended with my birth and will resume with my death. Until then, I've got lots of things I want to do, and I'm going to try to do as many of them as I can.
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