Maybe it's the letdown after the trip, but I feel so tired and with so little to look forward to. My medical condition has plateaued at a very low level, leaving me too tired to do much but apparently too healthy to die. And all the tension between Julie and me is sapping my emotional energy. As always, I'm trying to keep my emotions on the surface and let myself cry when I need to cry.
I'm turning my thoughts to Thanksgiving, which we will keep small--just Marty and me, plus Donna and possibly one or two other friends. Thanksgiving is my favorite holiday--with no religious significance, it's about community and mutual support, two things of great significance in my life. We've figured out a menu most of which can be prepared in advance, and which will leave lots of great leftovers. Planning a lovely meal with friends is a good way to keep my mind off all of this bad stuff. And I really do love turkey and gravy and cranberry sauce and all that good stuff.
A lot of people find it silly, but I really do like to use Thanksgiving as a time to reflect on and appreciate the things in my life I am thankful for. Even with all the things that are so bad in my life, dying of this awful disease, as well as the estrangement from my daughter, the amazing thing is that I still really do have things to be thankful for. Having Marty in my life and seeing daily evidence of his love and devotion is the biggest, and almost as big is the care I get from hospice, helping me to maximize the time that I have and make it as good as possible.
This morning I got an e-mail from a Website called disease.com, saying that they had selected my blog as a "Top Blog," which they will list on their site and giving me a banner about it to display on mine. I took a look at the site but can't figure out who sponsors it--it doesn't seem to be primarily commercial, but I would like to find out more about it. It does seem that it would get me a lot more readers.
Tuesday, November 10, 2009
Saturday, November 7, 2009
Some very tired days
Although I didn't feel abnormally tired in the early part of the week (when I was expecting to, after the trip), the last few days I've been feeling really exhausted. I seem to have lost a day, as I find it hard to believe it's Saturday already. I just haven't done much of anything.
There is a big change about to happen, as Julie told me the other day that she and Jim decided they need more space and are moving to a larger apartment nearby. She said that she would take care of advertising the apartment and doing the initial interviewing, although of course I would make the final decision. Arlington is considered a desirable place to live, so I feel confident that it won't take long to find a tenant. Oddly, I was thinking a few days ago that it must be difficult to have just one bathroom for five people, and then a few hours later she told me about moving!
I never had the energy to try taking a shower while we were away (there was some sort of fold-away built in seat in the tub in the hotel), but on Monday I was feeling strong enough, so Nancie gave me a wonderful shower. Then when she was here on Wednesday I told her I was feeling itchy all over (I had waked up several times during the night because of it), so she rubbed lotion all over my body, remarking on how dry my skin looked. And when she was here yesterday I told her I didn't feel strong enough for a shower, so instead she gave me a lovely sponge bath in bed, and with more lotion and a fresh nightgown, which made me feel great. (This is just one more example of the quality of life issues that are so prominent in hospice care.)
Marty went out to Bed Bath & Beyond the other day and bought some new fluffy pillows, and I tried last night to see if I could sleep better with my head raised a bit higher. I'm not sure if it worked or not, as I woke up several times and turned on my reading light, but each time I found that after a few minutes nothing I was reading was making sense, so I got back to sleep quite quickly, waking for good about eight. But I've been both tired and sleepy all day.
My vital signs monitor is acting oddly. Usually, the voice tells me first to put on the blood pressure cuff, and then the finger sensor, and then to push the start button, but for the last two days it has gone directly from the cuff to pressing the start button, leaving the finger sensor out entirely. I told the nurse who called me after the readings were transmitted about this problem, and she said she was leaving a note for Maureen, so I guess the machine will have to be recalibrated, either remotely or in person. Technology is great--when it works!
As I write, I'm watching the debate in the House on the health care reform bill. It is astonishing how many lies the Republicans are telling about the evils of "government run health care," totally ignoring the ways that insurance companies are the real bureaucrats between doctors and patients, denying care while making enormous profits. Even this bill, if it passes, is so watered down from what it should be that I wonder if it will make enough of a difference.
It would be really nice to go out somewhere this weekend--the weather is mild and the sun is out--but I feel too tired to even think about getting dressed. And with the change to standard time it now gets dark so early, something I always hate and which reminds me that winter is coming. Why isn't it time for me to just check out?
There is a big change about to happen, as Julie told me the other day that she and Jim decided they need more space and are moving to a larger apartment nearby. She said that she would take care of advertising the apartment and doing the initial interviewing, although of course I would make the final decision. Arlington is considered a desirable place to live, so I feel confident that it won't take long to find a tenant. Oddly, I was thinking a few days ago that it must be difficult to have just one bathroom for five people, and then a few hours later she told me about moving!
I never had the energy to try taking a shower while we were away (there was some sort of fold-away built in seat in the tub in the hotel), but on Monday I was feeling strong enough, so Nancie gave me a wonderful shower. Then when she was here on Wednesday I told her I was feeling itchy all over (I had waked up several times during the night because of it), so she rubbed lotion all over my body, remarking on how dry my skin looked. And when she was here yesterday I told her I didn't feel strong enough for a shower, so instead she gave me a lovely sponge bath in bed, and with more lotion and a fresh nightgown, which made me feel great. (This is just one more example of the quality of life issues that are so prominent in hospice care.)
Marty went out to Bed Bath & Beyond the other day and bought some new fluffy pillows, and I tried last night to see if I could sleep better with my head raised a bit higher. I'm not sure if it worked or not, as I woke up several times and turned on my reading light, but each time I found that after a few minutes nothing I was reading was making sense, so I got back to sleep quite quickly, waking for good about eight. But I've been both tired and sleepy all day.
My vital signs monitor is acting oddly. Usually, the voice tells me first to put on the blood pressure cuff, and then the finger sensor, and then to push the start button, but for the last two days it has gone directly from the cuff to pressing the start button, leaving the finger sensor out entirely. I told the nurse who called me after the readings were transmitted about this problem, and she said she was leaving a note for Maureen, so I guess the machine will have to be recalibrated, either remotely or in person. Technology is great--when it works!
As I write, I'm watching the debate in the House on the health care reform bill. It is astonishing how many lies the Republicans are telling about the evils of "government run health care," totally ignoring the ways that insurance companies are the real bureaucrats between doctors and patients, denying care while making enormous profits. Even this bill, if it passes, is so watered down from what it should be that I wonder if it will make enough of a difference.
It would be really nice to go out somewhere this weekend--the weather is mild and the sun is out--but I feel too tired to even think about getting dressed. And with the change to standard time it now gets dark so early, something I always hate and which reminds me that winter is coming. Why isn't it time for me to just check out?
Wednesday, November 4, 2009
Hospice--patient centered care
My trip to Omaha never would have been possible without the support and cooperation of my hospice program, Visiting Nurse and Community Health of Arlington, Massachusetts, and the Omaha hospice program, Visiting Nurse Association of Omaha who provided seamless coverage and made me feel safe and secure. About a week before the trip, I notified Louise, who has been my regular nurse since Lauren has been out on sick leave, and the administrator of the Arlington hospice located the Omaha program and sent them my records. Before we left, I also called Omaha to give them information about our flights and where we would be staying, and when we arrived at the hotel I called to let them know the trip had gone well. The nurse on call, Scott, came to the hotel, although it was quite late in the evening, just to check me out (he also brought some distilled water which we needed for our "elephants"). He was so cheerful and friendly and encouraged us to call at any time if there were any problems.
When we needed to call, the next day, because I was feeling so awful, sick to my stomach and probably feverish, the nurse on call, Amy, came and stayed for several hours, first administering some medicine that she had brought with her at my request (a compazine suppository), and then, when that brought only partial relief, she called the doctor and went out to get some additional medicines. All together I think she was with us for several hours, and she was so supportive and positive while I was weepy and miserable.
The hospice movement attracts certain kinds of people, who find it rewarding to work with dying patients, although I suppose many people would not find it appealing work. But in all my experiences with hospice, both when my dad was a hospice patient, and now my own, I have found a group of people who are upbeat without any kind of false cheerfulness, but who instead can help to find a positive aspect in any situation.
When I first came into hospice, I was shown a diagram of patient-centered care, with the patient represented by a big circle in the middle, surrounded by smaller circles standing for family, nurses, social workers, etc., all of whom are there to help the patient achieve his or her goals. So when I said I wanted to go to Omaha, many people at both agencies had to do a lot of things to make it possible, without any sense that they were going out of their way or doing something "extra" or unnecessary--if it was something I wanted to do, hospice was there to make sure it happened.
So when I learned recently that Congress has proposed cuts to Medicare hospice funding, I found it shocking. According to the Alliance for Care at the End of Life, hospice programs are facing an 11.8% rate cut due to regulatory changes and health care reform, which could lead to programs not being open to new patients, or even having to close. Cutting hospice is certainly not cutting the "waste, fraud, and abuse" that we have been hearing so much about in the health care reform debate. In 2007, an independent study found that hospice saved Medicare $2 billion, so it makes no sense to cut these programs. (See www.nhpco.org/advocacy.)
This is, of course, the same institutional bias that we have always complained about in the mental health and disability advocacy communities. Because of the big taboo against talking about dying, people end up dying expensive deaths in hospitals in which quality of life is not a major concern, and which Medicare and private insurance pay for without question, instead of dying at home (as most people say they want to do), with compassionate hospice care that puts their quality of life at the forefront.
Somehow, we need to build a coalition around this issue--cutting hospice is wrong morally, and wrong fiscally. There certainly is billions of dollars of waste, fraud, and abuse in the health care system, where some people are getting very rich, but it's certainly not in hospice programs, which run on a shoestring.
When we needed to call, the next day, because I was feeling so awful, sick to my stomach and probably feverish, the nurse on call, Amy, came and stayed for several hours, first administering some medicine that she had brought with her at my request (a compazine suppository), and then, when that brought only partial relief, she called the doctor and went out to get some additional medicines. All together I think she was with us for several hours, and she was so supportive and positive while I was weepy and miserable.
The hospice movement attracts certain kinds of people, who find it rewarding to work with dying patients, although I suppose many people would not find it appealing work. But in all my experiences with hospice, both when my dad was a hospice patient, and now my own, I have found a group of people who are upbeat without any kind of false cheerfulness, but who instead can help to find a positive aspect in any situation.
When I first came into hospice, I was shown a diagram of patient-centered care, with the patient represented by a big circle in the middle, surrounded by smaller circles standing for family, nurses, social workers, etc., all of whom are there to help the patient achieve his or her goals. So when I said I wanted to go to Omaha, many people at both agencies had to do a lot of things to make it possible, without any sense that they were going out of their way or doing something "extra" or unnecessary--if it was something I wanted to do, hospice was there to make sure it happened.
So when I learned recently that Congress has proposed cuts to Medicare hospice funding, I found it shocking. According to the Alliance for Care at the End of Life, hospice programs are facing an 11.8% rate cut due to regulatory changes and health care reform, which could lead to programs not being open to new patients, or even having to close. Cutting hospice is certainly not cutting the "waste, fraud, and abuse" that we have been hearing so much about in the health care reform debate. In 2007, an independent study found that hospice saved Medicare $2 billion, so it makes no sense to cut these programs. (See www.nhpco.org/advocacy.)
This is, of course, the same institutional bias that we have always complained about in the mental health and disability advocacy communities. Because of the big taboo against talking about dying, people end up dying expensive deaths in hospitals in which quality of life is not a major concern, and which Medicare and private insurance pay for without question, instead of dying at home (as most people say they want to do), with compassionate hospice care that puts their quality of life at the forefront.
Somehow, we need to build a coalition around this issue--cutting hospice is wrong morally, and wrong fiscally. There certainly is billions of dollars of waste, fraud, and abuse in the health care system, where some people are getting very rich, but it's certainly not in hospice programs, which run on a shoestring.
Tuesday, November 3, 2009
The rest of the trip...coming home
After I gave my talk I was exhausted, but also exhilarated. So many people came up to me, wanting me to sign their copies of my book, or the program, or to give me their cards or things they had written, or just to talk. Eventually we made it back to the hotel room and were able to rest and relax. I felt so totally different from the way I'd felt on Thursday, when I was so miserable and scared and wondering how we were ever going to get home.
We talked about going out somewhere for dinner (the hotel van was available to take us to an area with lots of shops and restaurants), but I was nervous about using up any excess energy before what was sure to be a tiring travel day, so we ended up eating in the hotel restaurant again, as we had the night before. It was nice when my good friend Pat Risser pulled up a chair and we got to have a nice long visit.
On Friday evening after dinner we went to see some of the talent show, which is always a mixed bag, but included some pretty talented people, especially one guy from West Virginia with a gorgeous voice. Gayle Bluebird did her "Henrietta" persona, which she does every year; this year, her act was that she was talking on the phone with Mark Davis, who was too sick to be there, so he couldn't do his specialty, in which he appears in full beauty pageant regalia as "Miss Altered States of the Arts"! It was very funny and was nice to have Mark there, at least in spirit. (I love the way in which the GLBT contingent at Alternatives have named themselves the very in-your-face Fruit and Nut Bar).
The talent show was supposed to include an "ice cream social," so Marty decided not to have meat for dinner so he could eat ice cream later (since he observes kosher requirements); what a disappointment when we found just some little cups of sherbet and frozen fudge bars. But when we stuck our heads in after Saturday dinner at the Conference Halloween dance, it was a nice surprise to find a hotel waitress cutting up a big cake and we each had a big slice, and then called it a night. (Marty told me he had had a conversation with the hotel restaurant about making a small cake for my birthday--which was on Friday--and that it had ended up with them saying it wasn't possible.)
When Bryce, the guy from Philadelphia who set up our tickets asked about scheduling, I told him we definitely didn't want to take any early flights, so we weren't scheduled to leave until four, which turned out to be a very good thing (in addition, the clocks had gotten set back an hour to standard time, giving us an extra hour). We started packing, and then waited for one of the hospice nurses, Kathy, to come to take the port out of my arm that Amy had left in place. Everybody we had dealings with from the Omaha hospice was just so nice and friendly and helpful that we decided we would send a card of appreciation, and I have some nice note cards (yes, actual mail rather than e-mail!).
Then we went for the hotel's Sunday brunch, as we didn't want to end up in the same situation as on the trip out, when we ended up not eating all day, which may well have contributed to me getting so sick. Marty and I each got an omelet--mine was mushrooms, onions, ham, and cheese--but when I started eating I got hit with one of those extreme fatigue episodes and had to struggle to eat about half of it, along with some delicious fresh fruit, juice, and tea. Fortunately, I was mostly packed, and we had time when we got back to the room for me to sleep for over an hour. Marty said he had a hard time waking me up (when I was falling asleep I couldn't imagine how I was ever going to manage the trip), but sleep was restorative and I felt much better.
The trip itself went smoothly. We were worried about the portable concentrator, which has a much shorter battery life than promised, but between the extra battery pack and keeping the concentrator plugged in before we boarded each plane, the oxygen lasted. On the first leg, we were seated in Row 3, so I said I could walk onto the plane once I got out of the scooter at the end of the jetway, but on the Cincinnati-Boston leg we were further back so they used the aisle chair. Because they were small planes there was no jetway when we got off, both in Cincinnati and in Boston, so we had to use a rather scary lift, but in both cases my scooter was waiting for me right on the ground and so it was easy to get into the terminal.
One of the things that has changed since my flying days is that airlines charge for checked bags. United exempted anything labeled "medical equipment," and charged $10 per bag for the others; Delta's charge was $25 and they did not exempt medical equipment--very annoying!
We had a ride arranged, which also worked out perfectly, but by the time we were in the house it was about midnight and we were too tired to think about much else but getting to bed, and unpacking only what we absolutely needed, like our elephants and my nebulizer. I'm really surprised that I'm no more tired than normal, after all these stresses and expenditures of energy.
It's good to be home!
We talked about going out somewhere for dinner (the hotel van was available to take us to an area with lots of shops and restaurants), but I was nervous about using up any excess energy before what was sure to be a tiring travel day, so we ended up eating in the hotel restaurant again, as we had the night before. It was nice when my good friend Pat Risser pulled up a chair and we got to have a nice long visit.
On Friday evening after dinner we went to see some of the talent show, which is always a mixed bag, but included some pretty talented people, especially one guy from West Virginia with a gorgeous voice. Gayle Bluebird did her "Henrietta" persona, which she does every year; this year, her act was that she was talking on the phone with Mark Davis, who was too sick to be there, so he couldn't do his specialty, in which he appears in full beauty pageant regalia as "Miss Altered States of the Arts"! It was very funny and was nice to have Mark there, at least in spirit. (I love the way in which the GLBT contingent at Alternatives have named themselves the very in-your-face Fruit and Nut Bar).
The talent show was supposed to include an "ice cream social," so Marty decided not to have meat for dinner so he could eat ice cream later (since he observes kosher requirements); what a disappointment when we found just some little cups of sherbet and frozen fudge bars. But when we stuck our heads in after Saturday dinner at the Conference Halloween dance, it was a nice surprise to find a hotel waitress cutting up a big cake and we each had a big slice, and then called it a night. (Marty told me he had had a conversation with the hotel restaurant about making a small cake for my birthday--which was on Friday--and that it had ended up with them saying it wasn't possible.)
When Bryce, the guy from Philadelphia who set up our tickets asked about scheduling, I told him we definitely didn't want to take any early flights, so we weren't scheduled to leave until four, which turned out to be a very good thing (in addition, the clocks had gotten set back an hour to standard time, giving us an extra hour). We started packing, and then waited for one of the hospice nurses, Kathy, to come to take the port out of my arm that Amy had left in place. Everybody we had dealings with from the Omaha hospice was just so nice and friendly and helpful that we decided we would send a card of appreciation, and I have some nice note cards (yes, actual mail rather than e-mail!).
Then we went for the hotel's Sunday brunch, as we didn't want to end up in the same situation as on the trip out, when we ended up not eating all day, which may well have contributed to me getting so sick. Marty and I each got an omelet--mine was mushrooms, onions, ham, and cheese--but when I started eating I got hit with one of those extreme fatigue episodes and had to struggle to eat about half of it, along with some delicious fresh fruit, juice, and tea. Fortunately, I was mostly packed, and we had time when we got back to the room for me to sleep for over an hour. Marty said he had a hard time waking me up (when I was falling asleep I couldn't imagine how I was ever going to manage the trip), but sleep was restorative and I felt much better.
The trip itself went smoothly. We were worried about the portable concentrator, which has a much shorter battery life than promised, but between the extra battery pack and keeping the concentrator plugged in before we boarded each plane, the oxygen lasted. On the first leg, we were seated in Row 3, so I said I could walk onto the plane once I got out of the scooter at the end of the jetway, but on the Cincinnati-Boston leg we were further back so they used the aisle chair. Because they were small planes there was no jetway when we got off, both in Cincinnati and in Boston, so we had to use a rather scary lift, but in both cases my scooter was waiting for me right on the ground and so it was easy to get into the terminal.
One of the things that has changed since my flying days is that airlines charge for checked bags. United exempted anything labeled "medical equipment," and charged $10 per bag for the others; Delta's charge was $25 and they did not exempt medical equipment--very annoying!
We had a ride arranged, which also worked out perfectly, but by the time we were in the house it was about midnight and we were too tired to think about much else but getting to bed, and unpacking only what we absolutely needed, like our elephants and my nebulizer. I'm really surprised that I'm no more tired than normal, after all these stresses and expenditures of energy.
It's good to be home!
Monday, November 2, 2009
Saturday's award ceremony
Lunch on Saturday was the whole reason for my trip. Marty and I were seated at the head table, along with Joseph and another staff member of the Mental Health Association of Southeastern Pennsylvania (his organization), and I was sitting next to a woman I didn't recognize, so she said she was there because of her husband (sitting on the her other side), who turned out to be Senator Nelson from Nebraska. When it was his turn to speak, he went on and on and on about all his accomplishments in mental health, most of which had only tangential connections to our issues, although I was glad he mentioned probably Nebraska's most prominent consumer/survivor activist, J. Rock Johnson, and it was clear from what he said that they had had many interactions. When he'd finally finished, the two of them couldn't get out of there fast enough, which I found rather rude!
I had said to Marty that I wasn't sure what I would say, but felt confident that it would come together, but first, when I was introduced, the whole room erupted in chants of "Judi!...Judi!...Judi!..." which went on and on, and everyone rushing forward with their camera phones so that I felt I was surrounded by the paparazzi! When I finally got to speak, I was close to tears. I talked about how important this movement has been in my life, transforming me from someone who saw herself as a helpless "mental patient" to someone who was part of an important movement for social change. I talked about the work we had done, and what we had accomplished, but also how much more that needed to be done, and how gratifying it was to see so many new people getting involved, bringing in their own ideas and new energy, but recognizing that were building on what had come before. And I talked about what my life has become now, and how I saw hospice as the model of what we wanted the mental health system to do--putting the person's needs in the center and helping to figure out how to make those ideas and dreams happen. I certainly never could have made this trip without all the support I got from hospice both here and in Omaha.
I'll write more about the trip home (which went quite smoothly), but right now I'm tired and ready for bed. Amazingly, I'm not extraordinarily tired, and when Nancie was here earlier I even felt strong enough for a shower.
I had said to Marty that I wasn't sure what I would say, but felt confident that it would come together, but first, when I was introduced, the whole room erupted in chants of "Judi!...Judi!...Judi!..." which went on and on, and everyone rushing forward with their camera phones so that I felt I was surrounded by the paparazzi! When I finally got to speak, I was close to tears. I talked about how important this movement has been in my life, transforming me from someone who saw herself as a helpless "mental patient" to someone who was part of an important movement for social change. I talked about the work we had done, and what we had accomplished, but also how much more that needed to be done, and how gratifying it was to see so many new people getting involved, bringing in their own ideas and new energy, but recognizing that were building on what had come before. And I talked about what my life has become now, and how I saw hospice as the model of what we wanted the mental health system to do--putting the person's needs in the center and helping to figure out how to make those ideas and dreams happen. I certainly never could have made this trip without all the support I got from hospice both here and in Omaha.
I'll write more about the trip home (which went quite smoothly), but right now I'm tired and ready for bed. Amazingly, I'm not extraordinarily tired, and when Nancie was here earlier I even felt strong enough for a shower.
Saturday, October 31, 2009
The trip went well, but then disaster struck
After all the worries about all the things that could go wrong, things went about as well as they could on Wednesday. Ann came first thing in the morning to help with last minute packing and organizing, and Tim arrived on schedule to load everything up, including the scooter. As we started driving to the airport and he was asking what route to use, I suddenly remembered what the cab drivers call "the back way," which keeps you off the highways which can get jammed, and I was able to remember all the twists and turns. When we pulled up at the United terminal we easily found a porter for all our stuff, while Marty set up the scooter and we rolled up to the counter. It's been so long since I've been on a plane that I'd forgotten all about reserving seats, so we ended up pretty far back, but when we got to the gate the agent there was able to move us a few rows further up. As promised, I was able to drive the scooter right to the airplane door, and it was then hand lifted down to baggage, while I was put into an aisle chair and rolled to my seat.
The woman sitting in the window seat was also going to Nebraska (to Lincoln), and when I asked Marty if we could tell from the airport diagram where the commuter flights left from, she said they were usually in another terminal that looked to be a very long way from where we were coming in, so I worried about that for awhile. But once we were off the plane (again, the routine with the aisle chair, and, as promised, my scooter waiting for me just outside the airplane door), the agent told us that our flight was just at the other end of the terminal we were in. I was worried about Marty having to walk that far, but there was one of those carts that transport people with disabilities right there, so Marty got on that and I rode my scooter to the gate. It turned out that our flight was going to be late, because the crew was coming in on another flight, so there was time for a bathroom break. We should have gotten something to eat, but for some reason didn't, and eventually the crew arrived and we were able to board. The flight attendant asked to see the doctor's letter for my oxygen, which we hadn't needed until then. By that time, we were on the auxiliary battery pack, as this portable concentrator just does not have the battery life we were told it would.
Our arrival went smoothly once again, with my scooter ready for me, and our baggage already on the carousel by the time we got to baggage claim. The hotel van was waiting, and although it was quite full they were able to find room for us and all our stuff, with me in the scooter using the lift. At the hotel, a bellman took all our stuff from the van to our room. By this time we were both exhausted, and quite hungry, although I knew that I was only going to be able to pick at my food, because I was so tired. I also called our contact person at the Omaha hospice, because the large concentrator had not been delivered, so they put in a call to the oxygen company, and the technician arrived with the machine at just about the same time as Scott, the hospice nurse, who checked me out. I was amazed that I was feeling as good as I did, just very tired, and once we had eaten we went to sleep fairly quickly.
Unfortunately, I woke up on Thursday morning feeling awful, sick to my stomach, and with a stuffy nose that made it hard to breathe through my nose (and when I breathe through my mouth I'm not getting oxygen through the nasal cannula). I was feeling worse and worse. Marty urged me to take my pills but I said I was just going to throw them up. He tried the haldol cream, but it had no effect, and I was getting somewhat hysterical (and I'm sure very difficult). Marty called hospice, and a wonderful nurse, Amy, came. She called the hospice doctor, who prescribed some meds, so she went out to get them, and when she came back she gave me a couple of injections. Pinkypine so rarely has to do his job of getting held and squeezed whenever I get a needle, since I get one so rarely these days, but good bear that he is, he did quite well.
It took awhile, but eventually the meds kicked in. I was a bit alarmed that one of them was haldol, but I imagine it's a much lower dose than when it's used as a psych drug. Amy also put some sort of port into my arm so that Marty could give me additional drugs, which he did even though the thought of it makes him feel queasy. It didn't involve a needle, but a plastic connector that went into the port, but he still didn't like it, although he certainly rose to the occasion. Amy had said the meds would make me sleepy, and even though I'd slept a good part of the day, I woke up Friday morning feeling much better, and once again able to breathe through my nose. I was also hungry, so Marty went downstairs to the buffet breakfast and got there just as they were closing up. He brought some fruit and danish (and some bacon that my stomach didn't feel ready for), and I ate and drank and took all my pills, and eventually got dressed and we went to lunch.
I had missed the Thursday evening event where I was given the first annual Judi Chamberlin Joy of Advocacy Award, but saw Joseph Rogers at lunch, where he told me he had the actual award, which was a huge jar filled with chocolate! He said he would get it for me, but I told him we had so much stuff to transport that I would much prefer that he ship it to me. I was able to eat a reasonable amount of lunch, and was feeling pretty good. On Thursday, in my semi-delirium, I kept saying what a mistake the trip had been, and wondering how we were going to get home, but now I feel much more positive. I called hospice to report that I was feeling better, and got another very nice nurse who was familiar with my case and was glad to hear the good news.
It's now Saturday and we actually made it down to breakfast, and we're now resting until lunch where I'm being honored. It is so good to be here and to be seeing so many people that I thought I might never see again, as well as meeting people who are telling me how much my work has meant to them. This morning's speaker was Andy Imparato of the American Association of People with disabilities (www.aapd.com), who talked about the importance of cross-disability work and pointing to a lot of recent successes in Washington, which was good to hear. He and I got a brief chance to talk afterwards, and we're going to talk more in the next few weeks.
Through all of this, Marty has been an absolute rock, calm and steady when I needed him, and doing a lot of unpleasant tasks without complaint. Having him in my life continues to be wonderful.
The woman sitting in the window seat was also going to Nebraska (to Lincoln), and when I asked Marty if we could tell from the airport diagram where the commuter flights left from, she said they were usually in another terminal that looked to be a very long way from where we were coming in, so I worried about that for awhile. But once we were off the plane (again, the routine with the aisle chair, and, as promised, my scooter waiting for me just outside the airplane door), the agent told us that our flight was just at the other end of the terminal we were in. I was worried about Marty having to walk that far, but there was one of those carts that transport people with disabilities right there, so Marty got on that and I rode my scooter to the gate. It turned out that our flight was going to be late, because the crew was coming in on another flight, so there was time for a bathroom break. We should have gotten something to eat, but for some reason didn't, and eventually the crew arrived and we were able to board. The flight attendant asked to see the doctor's letter for my oxygen, which we hadn't needed until then. By that time, we were on the auxiliary battery pack, as this portable concentrator just does not have the battery life we were told it would.
Our arrival went smoothly once again, with my scooter ready for me, and our baggage already on the carousel by the time we got to baggage claim. The hotel van was waiting, and although it was quite full they were able to find room for us and all our stuff, with me in the scooter using the lift. At the hotel, a bellman took all our stuff from the van to our room. By this time we were both exhausted, and quite hungry, although I knew that I was only going to be able to pick at my food, because I was so tired. I also called our contact person at the Omaha hospice, because the large concentrator had not been delivered, so they put in a call to the oxygen company, and the technician arrived with the machine at just about the same time as Scott, the hospice nurse, who checked me out. I was amazed that I was feeling as good as I did, just very tired, and once we had eaten we went to sleep fairly quickly.
Unfortunately, I woke up on Thursday morning feeling awful, sick to my stomach, and with a stuffy nose that made it hard to breathe through my nose (and when I breathe through my mouth I'm not getting oxygen through the nasal cannula). I was feeling worse and worse. Marty urged me to take my pills but I said I was just going to throw them up. He tried the haldol cream, but it had no effect, and I was getting somewhat hysterical (and I'm sure very difficult). Marty called hospice, and a wonderful nurse, Amy, came. She called the hospice doctor, who prescribed some meds, so she went out to get them, and when she came back she gave me a couple of injections. Pinkypine so rarely has to do his job of getting held and squeezed whenever I get a needle, since I get one so rarely these days, but good bear that he is, he did quite well.
It took awhile, but eventually the meds kicked in. I was a bit alarmed that one of them was haldol, but I imagine it's a much lower dose than when it's used as a psych drug. Amy also put some sort of port into my arm so that Marty could give me additional drugs, which he did even though the thought of it makes him feel queasy. It didn't involve a needle, but a plastic connector that went into the port, but he still didn't like it, although he certainly rose to the occasion. Amy had said the meds would make me sleepy, and even though I'd slept a good part of the day, I woke up Friday morning feeling much better, and once again able to breathe through my nose. I was also hungry, so Marty went downstairs to the buffet breakfast and got there just as they were closing up. He brought some fruit and danish (and some bacon that my stomach didn't feel ready for), and I ate and drank and took all my pills, and eventually got dressed and we went to lunch.
I had missed the Thursday evening event where I was given the first annual Judi Chamberlin Joy of Advocacy Award, but saw Joseph Rogers at lunch, where he told me he had the actual award, which was a huge jar filled with chocolate! He said he would get it for me, but I told him we had so much stuff to transport that I would much prefer that he ship it to me. I was able to eat a reasonable amount of lunch, and was feeling pretty good. On Thursday, in my semi-delirium, I kept saying what a mistake the trip had been, and wondering how we were going to get home, but now I feel much more positive. I called hospice to report that I was feeling better, and got another very nice nurse who was familiar with my case and was glad to hear the good news.
It's now Saturday and we actually made it down to breakfast, and we're now resting until lunch where I'm being honored. It is so good to be here and to be seeing so many people that I thought I might never see again, as well as meeting people who are telling me how much my work has meant to them. This morning's speaker was Andy Imparato of the American Association of People with disabilities (www.aapd.com), who talked about the importance of cross-disability work and pointing to a lot of recent successes in Washington, which was good to hear. He and I got a brief chance to talk afterwards, and we're going to talk more in the next few weeks.
Through all of this, Marty has been an absolute rock, calm and steady when I needed him, and doing a lot of unpleasant tasks without complaint. Having him in my life continues to be wonderful.
Tuesday, October 27, 2009
Getting ready to leave
After accomplishing almost nothing yesterday, I feel much more energetic today, so I have been working today at getting packed and organized. I suddenly remembered yesterday evening that each airline needs a signed form from the doctor regarding my oxygen (which we both knew about last week, but then forgot), so today Marty took the forms to Dr. Meyer's office, and I called the airlines regarding the other problems, which I hope are now not going to be problems.
We have arranged a ride to the airport on this end, but I forgot about needing a ride at the other end, so I've put in a call and sent e-mail about that. I had asked the guy from the Mental Health Association of Southeastern Pennsylvania, which is organizing this year's conference, to make sure we didn't have to be on any really early flights, so we are not leaving Boston until 1 P.M., and our flight home leaves at 4 P.M. This morning we both slept until after nine--amazingly late--so I think tomorrow we will need to get up with the alarm, as there is some stuff that can't be packed till the morning (like my nebulizer, and both of our "elephants" (which is what we call our bi-pap machines, because of the hose that looks like an elephant's trunk).
I've talked with someone at the Omaha hospice, and they sound very enthusiastic about my coming there. So now I just have to hope that everything goes smoothly with the flights, my scooter, making the connection, and all the details of flying. Fortunately, I'm feeling very strong today, and hope that things will be as good or better tomorrow. Unfortunately, Marty isn't feeling well--last night when we were getting ready to go to bed he started feeling very weak and out of it, and even after a night's sleep he is still not feeling great. It's a little scary for me (and I'm sure for him, too), but I hope he'll be feeling up to traveling tomorrow.
Another amazing thing that happened is that I got an e-mail from someone who works for an organization in Washington that lobbies for hospice and palliative care issues, who came across my blog and wants me to help them lobby against proposed cuts in Medicare hospice programs. It's the exact same issue as in mental health--cut community programs that save money and improve quality of life, even though it will end up costing more down the line. I e-mailed her right back and also left a phone message, and am looking forward to finding out more.
I got a call this afternoon from Lauren Spiro, who is the staff person for our organization with the mouthful of a name--the National Coalition of Mental Health Consumer/Survivor Organizations (www.NCMHCSO.org), reminding me that I will be receiving the first "Judi Chamberlin Joy in Advocacy" award at their meeting on Thursday evening. She was so excited that I will be there and was hoping I could receive it in person, and I told her I would if I had the energy, which I can never predict in advance. It's being held at a nearby hotel but she said there is a walkway connecting the two, so it won't be a problem with my scooter, as long as I'm not too tired.
There's still a lot I need to do, so I'd better end here.
We have arranged a ride to the airport on this end, but I forgot about needing a ride at the other end, so I've put in a call and sent e-mail about that. I had asked the guy from the Mental Health Association of Southeastern Pennsylvania, which is organizing this year's conference, to make sure we didn't have to be on any really early flights, so we are not leaving Boston until 1 P.M., and our flight home leaves at 4 P.M. This morning we both slept until after nine--amazingly late--so I think tomorrow we will need to get up with the alarm, as there is some stuff that can't be packed till the morning (like my nebulizer, and both of our "elephants" (which is what we call our bi-pap machines, because of the hose that looks like an elephant's trunk).
I've talked with someone at the Omaha hospice, and they sound very enthusiastic about my coming there. So now I just have to hope that everything goes smoothly with the flights, my scooter, making the connection, and all the details of flying. Fortunately, I'm feeling very strong today, and hope that things will be as good or better tomorrow. Unfortunately, Marty isn't feeling well--last night when we were getting ready to go to bed he started feeling very weak and out of it, and even after a night's sleep he is still not feeling great. It's a little scary for me (and I'm sure for him, too), but I hope he'll be feeling up to traveling tomorrow.
Another amazing thing that happened is that I got an e-mail from someone who works for an organization in Washington that lobbies for hospice and palliative care issues, who came across my blog and wants me to help them lobby against proposed cuts in Medicare hospice programs. It's the exact same issue as in mental health--cut community programs that save money and improve quality of life, even though it will end up costing more down the line. I e-mailed her right back and also left a phone message, and am looking forward to finding out more.
I got a call this afternoon from Lauren Spiro, who is the staff person for our organization with the mouthful of a name--the National Coalition of Mental Health Consumer/Survivor Organizations (www.NCMHCSO.org), reminding me that I will be receiving the first "Judi Chamberlin Joy in Advocacy" award at their meeting on Thursday evening. She was so excited that I will be there and was hoping I could receive it in person, and I told her I would if I had the energy, which I can never predict in advance. It's being held at a nearby hotel but she said there is a walkway connecting the two, so it won't be a problem with my scooter, as long as I'm not too tired.
There's still a lot I need to do, so I'd better end here.
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