Sunday, May 31, 2009

Every little thing is an effort

It's getting harder and harder for me to do even the simplest things. A "trip" to the bathroom leaves me exhausted and gasping for breath. I just want to stay in bed, but at the same time I feel so frustrated at not being able to do anything. When I'm lying here I think about how easy it would be to do some simple thing, and then I try and find that I can't do it, which leaves me feeling even more frustrated. I don't know how long I will continue to get weaker and weaker; I'm already almost totally bedridden. I guess I should start doing some things, like brushing my teeth, in bed, as it is so tiring just to stand at the bathroom sink.

At least I've stopped wetting the bed. That left me feeling so humiliated--it's such a basic loss of control. Marty had to change the sheets yesterday, which is hard for him. When Laurel is here tomorrow I'll have her wash all the stuff that got wet. I also think I should start having some adult diapers in the house--that's humiliating, too, but not as bad as a wet bed.

We were up very late last night, till about two; it was one of those times when I was too upset to want to go to sleep. So we slept late this morning, till about nine. I'm feeling tired now--I've been coughing all day, unlike most days when I usually stop coughing after a couple of hours. I've got sore muscles in my chest from all this coughing. I spoke to one of the hospice nurses a little while ago, who suggested that I increase my morphine and take a nebulizer treatment, which has helped a little bit.

We had a good time with the Times crossword puzzle, which was very clever, although we figured out the trick pretty quickly. It's good that we can still share this pleasure together--there's so little else that we do for fun these days. Marty is under so much pressure and I hate to add to it, but at the same time I need his help for more and more things. I'm so lucky that he has the patience to put up with me when I'm so needy.

Saturday, May 30, 2009

Getting even weaker

I can't remember the names of the two people from the Arlington program that we met with on Thursday afternoon, but we had a good discussion about the program and what they could offer us. Julie has been feeling that we haven't been getting the level of service that Daddy got from his hospice program, but I'm not sure if I agree with her. I do think, though, that if I get services from this program there will definitely be a more personal relationship, as they will be serving a maximum of five clients (and right now they have only one). Julie thought it would be a good idea if I could get my nursing visit first thing in the morning, which is usually my worst time of day, so that maybe they could come up with some ideas of how to deal with some of the symptoms. Julie, Marty, and I will have to discuss whether to make the switch, and we told them we'd let them know next week.

Earlier in the day, Judy had helped me to pack, and once they left we got the car loaded up and went to the hotel, which is near MIT. We had a little while to rest and relax and then went down to the lobby and found the HSRI people, who were having some wine before dinner. Both Marty and I had steak, and when dinner was over I was quite tired. I lay down on the bed and fell asleep while Marty got things set up. Amazingly, even though I thought I'd been quite careful to pack all the right equipment, I still didn't have one of the little plastic connectors that connect two pieces of tubing--I had something that I thought was one of them, but it wasn't. We were able to manage without it, but it was quite annoying! The next time the oxygen guy comes I'm going to ask him for about a dozen of them.

Unfortunately, when I woke up in the morning, I was having a terrible day, and ended up falling back to sleep and sleeping most of the morning. I didn't feel up to getting dressed until about lunchtime, so it wasn't till then that Marty and I went downstairs and found the group, which was in the middle of lunch, and they got us some menus so we could eat too. Valerie announced that they had decided to give me a Board Leadership Award, and I was presented with a lovely glass plaque.

After the meeting got started again I lasted only a little while before getting very tired, and asked Marty to get us checked out of the room and get our stuff into the car, which took a ridiculous amount of time, so that when we got home we were both exhausted.

Again, I slept most of the evening and then in the morning. Marty is out with Donna helping her with some errands. I made a sandwich for lunch, and being out of bed just long enough to get the plate, the bread, and the chicken salad out of the refrigerator was exhausting.

I don't like being alone; he called a little while ago and said he's on his way home. Meanwhile, I've developed a very distressing new symptom, and have peed in the bed a couple of times (fortunately mostly on the pad, but still emotionally difficult). It may be time to start using adult diapers, and I don't like that idea at all!

Thursday, May 28, 2009

Tired and weak

Everything is becoming more and more of an effort. I'm dressed and packed and ready to go out later--I can't even remember the last time I was out, but I couldn't have done it without Judy's help, and lots of rest between each step. Yesterday afternoon, when Susan was here, I took a shower and she combed my hair. Marty is out getting his things together so we can go to the hotel in Cambridge once we have met with the person from the new hospice, who is coming here this afternoon.

After a few days of lovely springlike weather it's gotten cool and grey again. It keeps looking like it will rain. So I will probably need a light jacket, although I'll be mostly indoors, of course.

I feel such frustration at not being able to do things for myself. I get up to go to the bathroom and brush my teeth and get exhausted just from that. I'm going to have to figure out ways to do some things differently--like maybe get one of those little basins that they use in the hospital and brush my teeth in bed instead of standing at the sink. I have this thing about brushing my teeth every time I eat something; if I don't I feel very uncomfortable. I'll just have to find ways to do things using less energy, as my reserves get less and less, and also try to deal with the frustration.

It will feel good to attend the HSRI dinner tonight and the board meeting tomorrow and function as something other than a "professional invalid." At the last HSRI board meeting I had just gone into hospice and I announced it there--I'm sure some of the people didn't think I'd make it to this one. I'm not sure whether or not I did...but here I am!

Wednesday, May 27, 2009

Reiki definitely equals sleepy!

I was hoping that Angela didn't forget our rescheduled Reiki appointment, but she arrived right on time at noon. Kathy had promised to be here by eleven thirty, but had not yet arrived (she often runs a little late), so we waited until she arrived, checked me out, and ordered some meds that were running low.

Until then, it had been an easy day. Judy came so that Marty could go out and bring his computer (which has been acting up, and making him very nervous) to a repair shop--she is good company, and likes to hang out and chat, but also is very efficient at getting anything done that I need.

As soon as Kathy left, I took one of my soft pillows with me and lay on the daybed in the office, with my little blanket over me. I closed my eyes and immediately felt a sense of total relaxation, while Angela put her hands on my head, my neck, and various other parts of my body, and I felt myself slipping into a dreamy state. When she said quietly that she was done, I rolled onto my side and easily fell asleep. We didn't make arrangements for her next visit so I'll have to call hospice to set that up (I'm not going to be here on Friday). I don't know how long I would have slept but the phone woke me; it was the secretary at Dr. Meyer's office (my primary care doctor) with a somewhat confusing message about an Arlington-based hospice program that had seen the Globe article and wanted to take over my care at no charge. She said that Dr. Meyer would be in on Wednesday and she would discuss it with her and call me. I really don't want to change practitioners at this point but this of course needs to be thoroughly checked out. I think after the call I drifted off to sleep for a bit, but woke up because I was hungry.

I went back to bed and Judy brought me some pea soup and half a chicken salad sandwich. My appetite is definitely improving and I don't feel queasy. I think after a bit I fell asleep again, because the next time I woke up Judy had gone and Susan was here. I called Marty to see where he was and when he might be back and he said he was at his house sorting through some things and would be back soon, but when it was time for Susan to leave I said I'd be fine being alone for a little while and he arrived not too long after he left.

I fell asleep again in the evening, so didn't have dinner until pretty late (the second half of the stuff that Marty bought in Whole Foods the other day--roast lamb, asparagus, and roasted potatoes). I was in a bad mood, feeling incredibly frustrated about being so weak and unable to do things for myself. We didn't go to sleep till pretty late (around midnight, I think), and I woke up a little after five, but considering that I slept most of the day yesterday, that's certainly enough sleep.

Now it's almost seven and I'm waiting for Marty go wake up so I can have some breakfast, but I will try to be quiet (I need to find something to read), because he certainly needs his sleep.

Monday, May 25, 2009

Another day, a better day

Although I'm tired and weak, I am feeling so much better than yesterday! I slept through the night (including sleeping through an episode where Marty's C-pap machine tipped over on him and the water poured onto his head), and woke up feeling hungry for breakfast and not queasy. I had tea, a hard boiled egg, and a biscuit (still on the quest for the perfect biscuit), and was just finishing eating when Laurel arrived. She hadn't met Marty, so they introduced themselves and Marty got ready to go out to help his friend Donna with some problems.

Two people had promised to visit today. In the morning, Judene, who I used to work with at the National Empowerment Center ( came and we had a good talk. I was feeling strong enough to sit in the living room in my wonderful chair, but I'm getting so weak that by the time I was settled in the chair I was exhausted and it took me awhile to recover. But since everyone was saying what a beautiful day it was, eventually we moved onto the porch (the chair folds and they brought it out there for me). It was a little chilly and I needed a light blanket, but it was lovely to sit in the sunshine with my flowers around me.

After lunch (more of my pea soup, which Laurel enjoyed as well), we read and talked until my other visitor, Betty, arrived, and I moved back onto the porch. It had gotten just a bit warmer and was really lovely. For many years, I used to guest lecture at Betty's class at Bridgewater State College, and then lost track of her, so it was a nice surprise when she got in touch with the Globe writer after reading her story about me, asking if she could pass on her e-mail address. Betty asked me if I was up for writing an article about women and mental health, which I don't have the strength for, but I suggested instead that we could do a question and answer format, and we agreed to start working up some questions via e-mail.

I'm back in bed now, tired (maybe even ready to take a nap). I expect Marty back soon, and I may be up for some real food for dinner, so he's going to make a stop at Whole Foods and see what they have on their prepared food bar.

I really have to learn how to roll with these setbacks--I was so scared yesterday that things were just not going to get any better, which of course only increases the difficulty and panic.

Sunday, May 24, 2009

A rough ride

I spent most of Saturday sleeping, and then slept all night, waking up about five feeling really awful. I was very queasy--I hadn't eaten anything since lunch, and the thought of food just made me feel worse. Since I need to have something in my stomach to take most of my meds, this turns into a real dilemma. I called hospice and the nurse on call suggested that I try drinking a little tea and some plain toast (I actually had matzo) and when that stayed down I was able to take my meds and started feeling better. Until then, I was being a real bitch, carrying on but then apologizing for being so hard on everyone. Both Julie and Marty were great, letting me know that I should just let it out and they definitely weren't holding it against me. Florence called in the middle of it all, and said how much she wished she could help.

Angela, my Reiki therapist, was supposed to come at noon Friday and I was really looking forward to the treatment. When she hadn't arrived by one I called hospice--they tracked her down, and she called to say that she'd forgotten, which was disappointing, but she is coming on Tuesday instead.

We seem to have the PCA situation under control--Laurel, the woman I met on Friday, will be coming most mornings, Susan in the afternoons once school is out, Ann has mainly Fridays available, and we now have another person, Judy (with a "Y"), who is very flexible about hours and is here now. She arrived just as I was starting to feel better, and got fresh sheets on the beds and cleaned up the mounds of tissues which had accumulated everywhere. Marty is making pea soup (under my direction) as I think it is something that will actually stay down at a point when most foods I think of don't sound appetizing at all.

I can't believe how much I slept. Marty tried to wake me when he was ready to go to sleep, as I didn't have the bi-pap machine on (I'm supposed to sleep with it on to make sure I get enough oxygen), but he couldn't. I woke him around one to help me put it on (I call it my "elephant" because of the long trunk) and immediately went back to sleep.

So now it's mid-afternoon and maybe the rest of the day can get back to something of a normal schedule.

Friday, May 22, 2009

The Boston Globe is on the case!

Today's Boston Globe has the article about my fight with my insurance company to pay for my hospice care: There's also a link to a brief video in which I explain my situation. I'm sure that this article will generate a faster response from United Health Care than my snail-mail appeal, which I'm sure is just now entering their system.

The Globe writer, Kay Lazar, did an excellent job, and got everything right. There's also a great quote from the administrator at my doctor's office, Nancy Boucher, who says, "I have never had an insurance company call me and say a patient has exhausted her hospice [benefit]. I was devastated when they called me about her case. You mean this woman can't have hospice because she didn't die fast enough?"

Another piece of good news is that Julie found another person who wants to work as one of my PCAs, and brought her over yesterday evening for an interview. Her name is Laurel and she wants a minimum of ten hours a week. She's the mother of four kids (one with special needs), and I think she, Marty, and I probably know a lot of people in common (when I mentioned to her that he worked with groups promoting middle east peace). Since Ann has fewer hours available this semester (originally she thought she'd have more), I really need at least one more person. A day like yesterday, when I was exhausted from any exertion and Marty was out (he had two doctors' appointments, and then gave a talk in the evening) showed me that I really shouldn't be alone.

It's pretty early in the morning, but I feel stronger now than I have the past few mornings, so I'm hoping for a good day.

Thursday, May 21, 2009

Low energy

I just didn't have the energy to post yesterday. Please don't worry if I miss a day--if there are any major developments I will certainly make sure that they get onto the blog (Marty has the password and will post when necessary). I'm just extremely tired and find that any expenditure of energy leaves me gasping. I had an acupuncture treatment yesterday; maybe because I'm so low energy, I didn't find it as relaxing as usual.

We've also been having TV troubles--the TV stopped working on Tuesday when Marty was out. He often has some little tricks to get it working again, but when he came home it wouldn't go on, so I put in a call to the cable company and they said they would send a technician in the morning. Because I can't seem to get up the emotional energy to do much reading these days (aside from the newspapers, The New Yorker, and Vanity Fair), the TV has become a pretty constant companion. But yesterday morning it was working again, so I cancelled the service call. It was working last night, then stopped again, so I called the cable company again, and they're supposed to be here this morning. Now it's working again--like the car that stops making the funny noise when you take it to the mechanic!

Because the cable was out, Tuesday night we watched a video that's been sitting around for awhile, a favorite of mine that Marty had never seen, Citizen Ruth, a sardonic comedy about how both "pro-life" and "pro-choice" activists lose sight of the real person who gets caught up in their doctrinal disputes. I've seen this movie several times and highly recommend it. I can't remember what's next on my Netflix list.

Marty had to go out this morning to a doctor's appointment so I'm alone. Lisa should be here in a little while for my massage, and Julie is working on getting a few more PCAs lined up. I'm exhausted and hoping the massage will make me feel a little better.

Tuesday, May 19, 2009

Staying awake

I slept till eight this morning but have been awake all day, although still very tired and weak. Kathy was here and said that it might be because I've been taking a bit more morphine (which makes it easier to breathe), so I'm trying to cut back on that a little bit. I'm less hungry than I've been--last night I knew I needed to eat something so I could take my meds, but couldn't think of anything I wanted until Marty suggested some rice pudding.

He's out running some errands now and I asked him to get the ingredients for pea soup, which I certainly would have eaten last night if we'd had any. He said I will need to talk him through making it, but it's easy, just split peas, water, some chopped onion, salt, pepper, and carrots, then simmer till the peas disintegrate.

The other day I started wondering whether Peter and Ginger B. knew I was ill; since Peter's retired and they moved to Ithaca, so I sent them an e-mail and very promptly got one back from Ginger, who of course was sorry to hear my sad news, but very glad to be in touch. She read the blog and easily picked up how being in hospice has brought me great peace of mind.

I thought my new hospice volunteer was supposed to come this afternoon, so I suggested to Marty that he set me up in the living room on the new chair with all the things I needed within reach, and we finished the Sunday Times puzzle (we had done the Tuesday puzzle in the morning). The volunteer never showed up, but I told Marty I was sure I would be fine and after a bit Susan arrived (I had lost track of which days she was coming), so she put fresh sheets on my bed and did some laundry). She won't be back again till next week, but Ann just called and she's able to be here basically all day on Friday. We definitely need to find at least one more person--I'll check with Julie to see if she put something on the Arlington list. I'll have to call hospice to check out the volunteer situation.

This morning I had a little attack of the blues, feeling bad about being so helpless, but Marty comforted and reassured me that he would take care of me, which made me feel so much better.

Monday, May 18, 2009

Sleeping and more sleeping

I woke up this morning, stayed awake for an hour or so, and then went back to sleep. Since then I've been sleeping on and off with only brief periods of wakefulness. I've been out of bed a few times just to go to the bathroom and just wanted immediately to return to bed. I'll have to talk to Kathy tomorrow about whether this is significant.

I want to be strong enough to go to the MAMH gala on June 3rd--that's still more than two weeks away. Today the thought of getting up, getting dressed, getting out of the house, and being at the event seems overwhelming, but I've had these periods before and bounced back, so I hope I can get through this, too.

Marty isn't feeling well, either, and it makes me feel bad that I'm so dependent on him at a point where he needs to be taken care of himself. It's almost ten o'clock now and I guess I'll get ready to go to sleep (take my meds, brush my teeth) and presumably sleep through the night. I just hope I feel a little stronger tomorrow.

Sunday, May 17, 2009

Does Reiki equal sleepy?

It seems like I've done almost nothing but sleep since I had the Reiki treatment on Friday afternoon. I woke up pretty early this morning, went back to sleep, and slept again after breakfast till a little while ago. I don't mind sleeping this much, since when I'm awake I've been too focused on feeling unhappy and helpless.

The Sunday papers are here so I've been reading them a little, and Marty and I have made one stab at the Times puzzle, not getting too far on our first attempt, although I'm sure we'll go back to it later. It's a cool, grey day that looks like it's going to rain, so there's no point in trying to sit outside.

I am very weak and any little venture out of bed is exhausting. I guess I should just listen to my body, lie here and enjoy the lovely cool breeze that feels good as long as I stay under the covers, and eventually drift off again.

Saturday, May 16, 2009

A very groggy day

Ever since my Reiki treatment yesterday I've been drifting in and out of sleep. I slept through much of the evening, and then the night, and have been dozing a lot of the day. I'm not sure if it's a result of the treatment, but it feels good to be so relaxed after all the tension and unpleasant sensations of the past few days. I definitely feel better, although so tired and weak. But that's a lot better than the panicky, not being able to breathe feelings I've been having.

It's eleven o'clock now, and in a few minutes I'll brush my teeth and get ready to go to sleep for the night. I spent an hour or two sitting out on the porch in my new chair. Nancy stopped by and we talked for awhile about my feelings of calmness and relaxation. I am, once again, feeling at peace with myself and just want to drift away, although I know it's not going to happen that quickly or easily.

Being sleepy is far from the worst thing in the world.

Friday, May 15, 2009

Relaxing Reiki!

I had another good night's sleep last night, and a very pleasant surprise when Marty asked me what I wanted for breakfast. I asked for cinnamon raisin toast, but with a smile he suggested biscuits, which I guess he picked up sometime in this travels yesterday, and which I enjoyed a lot. Ann arrived about eleven and Marty went out to run some more errands just when Angela arrived for my Reiki treatment. I lay down on the daybed and closed my eyes and as Angela started by putting her hands gently on my head I went into a reverie. Several times I briefly opened my eyes, surprised that she was still here, continuing to touch me lightly, and when she really was done, I asked if she would get the small blanket from the living room because I was sure I could drift off to sleep. The little down comforter that I meant was actually on my bed, so she brought me a lightweight thermal blanket instead. My head was on a couple of very stiff foam rubber pillows, which I usually find very uncomfortable (the pillows on my bed are down, and what I always describe as "squishy"), despite that, I slept for about two hours, only waking up when Florence called, followed a few minutes later by Marty. I still felt wonderfully relaxed, but went back to lie in my bed. I still feel that I could fall back to sleep easily, but since Marty is bringing dinner soon (from Whole Foods), I may as well stay awake. I had Ann give me a little snack before she left.

We're definitely going to need more PCAs. Ann's new semester schedule means she's available Monday afternoons and Friday mornings, and Susan can come most afternoons (but not all). I'm scared there will come a time when I don't want to be left alone and no one is available. I am getting weaker, it's just happening so slowly it's hard to see.

Thursday, May 14, 2009

Getting back a little strength

As I hoped, I got a good night's sleep last night, falling asleep somewhere around eleven, while Marty was still watching TV, and waking about five. I read some e-mail, then went back to sleep and slept till eight-thirty. Marty was already watching TV (there are two episodes of "The West Wing" that start at eight). He said he slept pretty well too--we both certainly needed it.

Yesterday afternoon I got a call from Kay, the Boston Globe reporter, who said that the latest she'd been able to find out after several discussions with my insurance company that the limit on hospice care was in the contract between my ex-husband's employer and the insurance company (like many large companies, this company "self-insures," with the insurance company acting only as the administrator of the plan). So when I looked at the information on how to file an appeal (which my ex-husband had e-mailed me a week or more ago) I was surprised to find that this could not be done electronically, but had to be printed out and snail-mailed.

Lisa was due at eleven to give me my massage, and I explained to her the very uncomfortable feeling that the air had no place to go, so she worked on making my chest feel more open, and also massaged my feet for all-over relaxation. I definitely feel more comfortable (I'm also continuing to take more morphine and ativan than previously), and have not been doing any of that convulsive coughing. I've also been doing a bit of chocolate therapy!

After lunch I worked on the appeal, writing that basically hospice care was the optimum care for my condition, but without that support I would probably have to revert to my previous pattern of frequent hospitalizations, which are both much more expensive and provide less satisfactory care. Marty put it in the mail this afternoon, but of course it will be weeks before we get an answer, since it's all done by snail mail. Celeste, the hospice social worker, has assured me that they will not abandon me in any case.

Marty is out running errands and Susan is here getting stuff put away and keeping me company. The cats have been spending less time on my bed these days, but the hole in the time/space continuum seems to have closed (although the missing medications and Marty's pens remain on "the other side"). I'm feeling calm and relaxed and considerably better than I have been feeling.

Wednesday, May 13, 2009

A rough day

I began feeling really lousy yesterday--very weak, very tired. Susan was here in the afternoon; she did some laundry and put it away and helped in the search for the missing medicine. Marty had to go out for the evening, so before Susan left I had her put a chicken pie in the oven, and so just had to bring it into the bedroom to eat. But I kept feeling worse and worse--I get a strange feeling that's hard to describe. The best I can do is that my chest feels hollow, so that when I breathe the air just "leaks out." I know that's not what's really happening, but it's a very scary feeling, and I got into a panicky mood. There's a certain cough that happens when I feel that I'm not getting enough air, which is exhausting. By the time Marty got home I was feeling miserable, and I was in one of those states where I didn't want to go to sleep. I finally fell asleep from exhaustion some time after one, waking up around five but then falling asleep again till eight.

I was still experiencing the same awful feelings, and some time during the morning I put in a call to hospice. They weren't able to find Kathy, but I talked to another nurse, LuAnn, and she came out to see me within the hour. She suggested I take extra morphine and ativan, as well as a nebulizer treatment, but it's the reassurance, the knowledge that I am taken seriously as a reliable reporter of my own needs, that is as important as anything else. She also called the pharmacy and ordered replacements for the missing medication (which I'm sure will turn up eventually), which will be delivered tonight.

My friend Lauren, who lives in D.C., had said she would visit in mid-morning, and when she called yesterday to set up the details, she asked if there was anything I needed, and started listing things--when she got to "chocolate" I said I could always use chocolate! I told her I had an acupuncture treatment scheduled for two, so she said she'd also bring lunch. She arrived just as LuAnn was getting ready to leave, and presented me with a beautiful flowered shopping bag decorated with ribbons, containing what could well be the contents of a well-stocked chocolate boutique!

I decided I'd be most comfortable in the living room on my new chair, but was feeling so weak that I needed to lean on Marty to get there and get settled. We had a nice visit, talking about her trip and the state of the psychiatric survivor movement. She works for the national organization I was involved in setting up a few years ago, the National Coalition of Mental Health Consumer/Survivor Organizations (, which has been growing and becoming more visible in policy-making. Lauren told me that she is one of many people who first became aware of the movement by reading my book, which is always something that makes me feel happy.

We decided to order some Chinese food, which Marty went out to pick up. I was feeling a bit stronger and was able to sit at the table to eat. and Marty and Lauren were able to get to know each other a little. Just as we were finishing lunch, Anne arrived to give me my acupuncture treatment, so I said goodbye to Lauren and went to lie down on the daybed.

As always, I found the treatment was relaxing, and I am definitely feeling better and stronger. Feeling better means my mood is better, too. When Anne inserted several needles into my feet, she said they might release some strong emotions, and I told her that I try to keep my emotions close to the surface (last night I was doing a lot of loud bitching and moaning, for example).

Right now I feel tired, but not the deep exhaustion I was experiencing earlier, and I'm breathing better and feeling stronger. I need a good night's sleep, which I hope I can get tonight.

Tuesday, May 12, 2009

An opening in the space-time continuum?

Last night when Marty went to give Oliver his medication, he couldn't find him anywhere. He got worried that somehow Oliver had managed to get out again--the house cleaners had been here, and I had had a visitor, so we were afraid we hadn't been careful about reminding people about the doors. I was working hard on not getting upset all over again, and went to sleep trying not to think about it. In the morning, Marty went into the kitchen to feed the cats, and Oliver was standing there! Later on, we couldn't find Gilbert; also, Marty is missing the pens and magnifier he always keeps in his shirt pocket, and there is a delivery of medications that is missing. One or both cats are usually on the bed with me, but I've hardly seen them all day. The whole thing is giving me an eerie feeling.

Kathy had phoned in an order for my amitriptaline and prednisone on Friday. The pharmacy usually delivers in the evening, but we were out to dinner. I didn't think anything about it (they often redeliver if they can't make the delivery the first time), so today I mentioned to Kathy that I hadn't received the delivery, but when she called the pharmacy they said someone had signed for it. Evelyn now says that she brought it down here and asked me where to put it and I said to leave it in the kitchen, but I have no memory of it. I just called hospice--they are going to call the pharmacy to see if they can figure out whose signature is on the slip.

Yesterday I had a nice visit with Steve, who runs a legal advocacy program for people with disabilities. I was sitting in the living room on my wonderful new chair, which is just as comfortable as I thought it would be when I saw the picture. It supports every part of my body, and the more I sat in it the less tired I felt, as I didn't have to use any energy holding myself up. Marty has some ideas about how to rearrange things so that I can do more things sitting in it. Because my bed is so enormous, there really isn't room for it in the bedroom, but possibly we could rearrange things in the office/guestroom. There's no TV in there, but we could move one or buy another one.

Another exciting thing that happened yesterday was that I got a call from Bernie, the director of the Massachusetts Association for Mental Health, who said they wanted to give me a special lifetime achievement award at a gala on June 3rd, which would include $3,000 toward a scholarship fund for my grandchildren! He said the whole family was invited, and he would send a limousine to pick us up (it will be held at a hotel in the Seaport District in downtown Boston)--I told him the limo ride would probably be the best thing as far as the kids were concerned. Julie said that when she told the kids about it, Kyle said he would even wear a tie!

Monday, May 11, 2009

Peter brings us a real New York gift!

Marty and I, despite our many years in Boston, still consider ourselves transplanted New Yorkers, especially when it comes to food. We can spend hours talking about New York pizza, New York cheesecake, New York Danish pastry, etc., etc., some of which have inferior Boston counterparts, and others of which are simply unavailable. So when Peter arrived yesterday with a big bag of stuff that he had bought in Manhattan's famous smoked fish emporium, Russ and Daughters, I knew Marty would be thrilled. I called him (he was at his house getting some things together and was just about to leave for my house) and told him that Peter, whom he had never met, had brought some things which were going to make him very happy, which made him very curious. As soon as he arrived, Peter started unpacking, starting with the largest whitefish I've ever seen, which he proceeded to fillet with a pocket knife. He also had bagels, bialys, two kinds of lox, cream cheese, whitefish salad, and for dessert, chocolate covered grahams (a particular favorite of mine), and chocolate covered pretzels (which Marty is quite fond of). Laurie brought a platter of enormous strawberries dipped in chocolate, so we had quite a feast!

Unfortunately, they couldn't stay very long, because Peter had taken a late train from New York (he had visited his grandmother in the hospital in New York for Mothers' Day before leaving for Boston, so although it was a short visit it was a very enjoyable one.

It had been a busy day, and sitting at the table with Peter, Laurie, Florence, and Marty was very tiring. At one point I said I had to lie down and went into the living room and onto the couch, where I could still see and talk with everyone. When I get really tired just supporting my body in an upright position is exhausting. While he was out yesterday Marty went to Bed Bath & Beyond, and bought a folding lounge chair I had seen on their Website which I think will be helpful, as it will support my head and legs and tilts to various positions. I'm looking forward to seeing if it is as comfortable as it looks; if so, it will be useful both on the porch and in the house, where I think it will be a good place to sit when I have company.

Today has been a rough day; one of those days where each time I get out of bed (mainly to go to the bathroom), I get totally knocked out and spend a few minutes gasping for breath. I fell asleep for an hour or so late in the morning, and may take another nap this afternoon.

Florence left this morning about eight. Julie drove her to the train station. I was very sad to see her go, but she said she'd come back soon, and meanwhile we'll be talking on the phone regularly. She kept teasing that the cats were glad that she was leaving, because she has been keeping the door to her room shut. Oliver kept trying to sneak in, but every time she caught him in there she just had to look at him and tell him to leave, and he would just turn and walk out!

Sunday, May 10, 2009

Mothers' Day festivities

When Marty got up early this morning with the alarm, I was still half asleep--Marty had to leave early to meet his friend Donna, who wanted his help looking at an apartment on the south shore, and before he left he took off all the junk that had accumulated on the bed, and made my tea. (I'm a tea nut, and drink tea brewed from tea leaves in a special cup.) Yesterday, when Jim was planning the Mothers' Day breakfast, he asked about my tea, and I told him Marty would show him how to make it, but Marty said it was easier for him to do it himself.

At about eight Julie came downstairs and got into bed with me. Florence had decided she didn't want to eat in bed, so Jim and the kids brought in a chair for her and put it next to the bed, along with a small table (last week Kathy arranged for a rolling hospital bedside table to be delivered, and for some reason we got two of them--the second one has not yet been picked up despite Kathy having called the company twice, so it actually was useful). I used my bedside table, and Julie had a tray table with legs that sits on the bed. Jim, Evelyn, Kyle, and Vivian then brought us waffles, tea for Florence and me, coffee for Julie, and a big bowl of strawberries and blackberries. We sat and ate and talked and laughed and had a wonderful time.

Unfortunately, I was feeling very tired and didn't feel comfortable out of bed, and in fact at some point during the morning I fell asleep and was waked up by Marty calling to see how I was doing, which was all right because the plan was that we were going out to lunch and I needed to get up. Marty said that Donna had really liked the apartment, which was good news, and that they were going to have breakfast in Plymouth in a place called the All American Diner.

It took me awhile to get dressed because it was one of those days when everything made me short of breath, but I finally got ready and we drove to a suburban Chinese restaurant that is a branch of a Chinatown restaurant, where they serve dim sum from little carts. We ordered tons of stuff and devoured it--Julie and Jim have raised the kids to eat all kinds of food and they are pretty fearless when it comes to eating "strange" things. When Evelyn was really little one of her favorite things when we went for dim sum was clams (which she called "lamps")!

I was extremely tired when we got home, but I'm resting and looking forward to Marty's arrival and my visitors, Laurie and Peter, who are scheduled to arrive around six thirty.

Saturday, May 9, 2009

A comedy of errors

We left to drive into Boston a little after eleven. It was cloudy, but there were signs of the sun breaking through and we were hopeful the rain would hold off. Marty had brought the scooter battery in to charge at my suggestion, and I was sure I had thought of everything I needed. In order to go out, I need my small portable oxygen machine, which hangs from a shoulder strap, and I carry a small pouch with my essential medicines and other small odds and ends (credit card, cash, etc.). I had been carrying my big purse as well, but kept being asked (by Marty, Florence, and Julie) if I really needed it as it certainly is heavy, so I've been trying to take out of it just the things I need.

We drove downtown (the others had gone by T) and amazingly found a legal parking place right alongside the Common. Marty went to get the scooter out of the trunk when I suddenly realized that the keys to the scooter my purse! Also, it was just starting to drizzle, and the scooter is supposed to be kept dry as much as possible. Marty went to ask someone how close the Frog Pond was to where we were parked; it was quite close and we decided to see if we could walk it. But after only a few steps I became extremely short of breath and we had to go back to the car.

We could also see a carousel nearby, and I told Marty that I would love to ride it (not necessarily that one, any carousel will do). I have a feeling Marty will make that happen. We started to head home and Marty asked if I wanted to stop somewhere for lunch, so we went to a nice little Greek restaurant in North Cambridge where I had lamb souvlaki wrapped in a pita and Marty had grilled chicken cooked on a skewer. I'll probably just need a light snack for dinner (Marty will be out at a dinner for one of his organizations).

I feel so frustrated that I didn't get to see the kids dancing, just because of not thinking things through. We're going to take the two scooter keys and put one in the little pouch I always carry when I go out, and Marty will put the other on his key chain.

Tomorrow starts with our Mothers' Day breakfast in bed, and then Julie wants to go out for dim sum for lunch. In the evening, my friends Laurie (who works for Mental Disability Rights International) and Peter (a radical psychiatrist from New York) are coming to visit. It sounds like it will be a nice day (I hope there's nothing I can screw up).


Last night, on our way back from the restaurant, we had Kyle and Vivian in the car. Marty had to make a stop at his house to pick up some clothes, and while we were waiting I asked the kids if they had memories of me before I was sick. I said that I thought Vivian didn't (she's only seven, and I've been declining now for well over two years), but I was sure that Kyle would (he's twelve), and he did. He started by saying that I used to travel a lot, and then I asked about some trips we took together, and we started reminiscing about that. Viv did have some partial, confused memories of those two trips, when I took all three kids overnight to New York City. We stayed in a hotel, got to play in the pool, and saw a children's theater company, the Paper Bag Players (who have been around so long that I actually took Julie to see them when she was a little girl). On the second trip, we stayed in a very fancy hotel in Greenwich, Connecticut that had an amazing lobby with an indoor forest, a stream crossed by little bridges, and (most memorable to the kids), a player piano that played by itself! Kyle was enjoying these memories, and Viv kept chiming in with little fragments (I'm not sure whether she actually remembered or just wanted to be in the conversation).

Meanwhile, the other day, Evelyn, who's fourteen and very handy with crafty things (as is Julie) made a vest for my stuffed bear, Pinkypine, which is adorable. A couple of months ago I made a dress for his companion-bear, Bo-Bo, but a vest is totally beyond my sewing ability (although I did do the hemming and finishing once Evelyn figured out the pattern and cut it out and put it together). Julie says that Evelyn has become a typical moody teenager, although I haven't seen that much of that part of her.

Today we are going to the Boston Common to see Evelyn and Kyle perform in a Morris dancing group. This is an old English form of dancing which is quite intricate and fun to watch. Julie had suggested we go by T (Bostonian for subway) but I am nervous about accessibility, since I'll be in my scooter (the T station near here is fully accessible, but Park Street, where we have to get off, is the oldest station in the system, and, I believe, in the United States, and the elevator is very iffy, from what I've heard). So we're going by car and Marty is hoping we can find a handicapped parking spot. Meanwhile, we have to keep an eye on the weather, as it is looking like rain--the forecast was for rain overnight, stopping by morning, but since it hasn't started yet...

I'm still feeling good and strong after the Reiki treatment.

Friday, May 8, 2009

My second Reiki treatment

I had a rough morning, finding it hard to breathe and feeling totally exhausted (all the anxiety over Oliver's disappearance I'm sure contributed). Kathy came to see me and encouraged me to do a nebulizer treatment (which I hate to do, for some reason), but after she left I gave myself a treatment and it seemed to help. I was looking forward to Angela's coming for my Reiki treatment, very curious to see if it would have as dramatic results as the first one.

When she arrived, Marty asked if he could sit and watch and she said that would be fine. I lay on the daybed in the office/guestroom (the room that Florence has been using), which she said would give her more room to work. She touched different places than last time, including my arms and head, as well as my legs, and once again I found myself slipping into a dreamy, relaxed state. When I got up and walked out of the room, Florence said I looked like a totally different person! I felt so much stronger and, once again, amazed at how this simple procedure could have such dramatic results. Angela said that she thinks the results will be cumulative, and she will come again next Friday.

I had my lunch sitting out on my porch. There was a lovely breeze and the flowers are blooming, and it felt so good after the awfulness of last night and this morning.

I've also had several phone conversations with Kay, the Globe reporter. According to the United Health Care representative she spoke with, they never received a doctor's authorization for me to receive hospice care. I knew this was wrong, but I told her I would call Dr. Meyer's office to confirm this, and the person who answered the phone laughed when I told her what I had been told, saying (her actual words) "that's a crock." She told me she had spent a lot of time with United Health Care over the past few weeks, providing them with documentation, but that she would follow up again. So I guess the whole thing is going to get blamed on a paperwork mix-up.

As the afternoon went on I decided I wanted to go out. Julie said they were planning to go out for dinner, and I wanted to go buy a light summer dress (I've gained so much weight from steroids and inactivity that I can't fit into any of my clothes). So Marty and I went out first and I found a comfortable black dress, and then we met Julie, Jim, the kids, and Florence at a local restaurant with a varied menu and an enormous beer selection. Staying with my biscuit fixation, I had southern fried chicken and biscuits; Marty asked the waiter for some extra biscuits to take home, which we didn't even get charged for. They are definitely the best biscuits I've had so far.

Julie just came downstairs and announced how we will be celebrating Mothers' Day--I have to get all the junk cleared off my enormous bed, and then she, Florence, and I will lie in in and get served breakfast in bed by Jim and the kids! That sounds like fun!

A very anxious evening

I didn't post yesterday because I was too distraught--my cat Oliver was missing and we were afraid he had gotten out of the house. Both my cats are totally indoor cats, and Oliver is fourteen and needs daily thyroid medicine. The whole thing started when I discovered that the kitchen door was slightly ajar (because this is an old house, some of the doors are hard to close, and I almost always remember to ask everyone who comes in "Are you sure the door is shut tight?") If it's not, the cats can get it open. It leads to a back hallway and the basement stairs, and both cats have been known to go down to the basement where there are lots of hiding places. In this case, compounding the problem was the fact that my daughter's dogs, who are young and exuberant, had loosened the screen on the back door and were jumping through it, so we were afraid that Oliver might have gone through as well. Marty went down to the basement and called him, and he left some cat treats on the steps (a trick that has worked before).

I was emotionally in pieces--I just couldn't imagine how I would deal with his being gone. I spent the whole evening just shaking. My breathing got really weird and I could feel my heart pounding. Until then it had been a fairly good day. Lisa came at eleven to give me a massage, and we worked on getting my chest to feel more open, which seemed to help. Florence and Marty and I worked on a really hard and tricky crossword puzzle--the Thursday puzzle is often the most interesting of the week, with a twist or brainteaser worked into it, and it took us awhile to figure out.

Nancy, the chaplain, came for a visit--I think she was the one who didn't close the door tightly. When she arrived I decided we could all go sit in the living room, and it was at the end of her visit, when I was going back to bed, that I discovered the door open and we went to check on the cats. (Gilbert was lying on my bed but Oliver was nowhere to be found.) Unlike the last time Nancy visited, when I was feeling really bad and talking a lot about dying, this visit was much more upbeat. We were talking mainly about my battle with the insurance company and how acting as an advocate for myself was energizing me and making me feel strong.

I was hoping to hear from Kay, the Boston Globe reporter yesterday, but she hasn't called. I'm sure she will once she has talked to someone in a decision-making capacity.

Having Florence here has been really great. We've been laughing and joking a lot, and Julie has been hanging out a lot down here and it's been comfortable and nice. I don't even want to think about her leaving on Monday, but meanwhile I'm going to enjoy the rest of her visit.

Both Marty and I had a very hard time sleeping, because of anxiety. I got up at around five to go to the bathroom, and decided I'd open the kitchen door and call down into the basement for Oliver, and as I approached the door I heard a little "meow" and when I opened the door Oliver trotted right in. I picked him up and carried him into the bedroom to show Marty, but Marty wasn't there--he'd been unable to sleep and was in the dining room working, and he was as delighted to see Oliver as I was. We went back to bed and got a little more sleep, both very relieved. Oliver, of course, is acting like everything is normal. Gilbert really did seem a little puzzled last night since he and Oliver almost always hang out together, so I'm sure he's glad to have Oliver back, too.

Wednesday, May 6, 2009

More ups and downs

Today started out as another dreary day; it was drizzling in the morning so Florence decided not to walk, but later the sun came out for the first time in awhile (although it's still on the cool side). When I woke up before seven I went and sat in the kitchen and polished my fingernails, surprising Florence when she woke up and found me there. Doing my nails is another of those morale builders that I try to keep up with.

I decided I wanted French toast for breakfast (made with my whole wheat raisin bread); Florence volunteered to make it when Marty did one of his "mock horror" reactions ("You want what?"). I was back in bed by that time and just sitting up and eating was making me quite tired. It was yummy--since we were almost out of maple syrup I had it with blueberry jam.

The Globe photographer called and asked if it would be convenient for him to come around noon. I said I could show him how things were arranged so I could pretty much run my life from my bed. Florence and Marty were both a little concerned that I might be too tired to have him come, and I considered calling him to change it but then decided to go ahead, as who knows how I might be feeling tomorrow.

Like the reporter, the photographer seemed quite knowledgeable on the issues and sympathetic to my position. He spent quite a bit of time here, having me describe to the camera what my life was like, the nature of my disease, what I get from hospice, and the troubles I am having with my insurance company. He also interviewed Julie, but since they did that in the living room, I don't know exactly what they talked about. By the time he left I was feeling very tired, but still not the overwhelming fatigue where I don't even want to lift my head off the pillow.

During the afternoon, the reporter, Kay Lazar, called and said that she had called my case manager at United Health Care, who had quickly passed her off to someone authorized to speak to the press, and then had spoken to a second person. She said they had told her they needed a release from me to discuss my case in detail, which I could send her by e-mail (which she would forward); so I immediately sent that off. She said one thing she had been told was that I was in a "non-typical" hospice, and wondered if I had any idea what that meant (which I don't and can't imagine what they're talking about). I'm expecting that they will find some technicality to reverse their position, since it clearly makes them look both bad and stupid.

Marty is out for the evening, and Florence is upstairs having dinner with Julie, Jim, and the kids. They're going to bring some dinner down for me (I don't have the energy to go upstairs); I asked Florence to bring down my portion when she's finished so she can sit with me while I eat. Of course, I could always have more of my potato casserole, but since Julie's making fish (which I love and don't eat that often because Marty doesn't like it much), I can always have more of the casserole tomorrow (a reader asked for the recipe, which I posted in the comments section of yesterday's entry).

Tomorrow is massage day!

Tuesday, May 5, 2009

A busy day

It's another grey, dreary day, but it's been a good one. I am still feeling relatively strong and my mood is good. This morning I went back to my usual breakfast of whole wheat cinnamon raisin toast with my tea. When I woke up I could feel a lot of mucus in my chest that just wasn't moving, but once I took my cough medicine stuff started coming up relatively easily, without a lot of excess coughing, and I got all of it out in an hour or so.

Kathy arrived in mid-morning to check me out. Because I wasn't doing a lot of coughing I forgot that I was going to talk to her about the coughing fits, so I'll have to remember to do that next time she's here.

Anne came at noon to give me my acupuncture treatment, which as always I found relaxing, drifting off into a reverie while the needles were in and feeling quite energized afterwards. I got a call from my case manager at United Health Care (a new one, not the one I've been dealing with for months), and I tried hard to make the case to her that I needed hospice care or I would end up back in the hospital. There was just enough time for a quick lunch of a chicken salad sandwich on whole wheat before the Boston Globe reporter arrived.

I went to sit in the living room, and the reporter, Florence, Julie, Marty, and I all talked for well over an hour about my situation and how the insurance company was trying to prevent me from getting the care I need. She was extremely sympathetic and knowledgeable, asking good questions that showed she was familiar with the absurdities of the health care payment system. After awhile the photographer showed up and took a number of pictures; by this time I was pretty tired and he took pictures of me being helped back to my room and getting settled in bed. He's supposed to come back tomorrow to shoot some video (for background material that will be used on

Once I was back in bed Susan arrived and she helped to get a lot of stuff organized and kept me company for awhile. I'm alone now (Florence is out with her cousin for a movie and dinner), but I feel comfortable. In a little while I will put some more of my potato casserole in the microwave.

Monday, May 4, 2009

An amazing amount of energy

I'm home, and I'm tired, but I'm not feeling the overwhelming fatigue that I thought I might. Julie drove Florence and me to the salon, a tiny but charming Victorian place where I sat on a "throne" while a lovely young woman cut my toenails, massaged my feet and legs, and polished my toenails a lovely shade of deep reddish pink (very similar to the polish I have on my fingernails). Instead of a whirlpool footbath, my feet got soaked in a copper tub filled with warm water and marbles.

When Julie dropped us off, I had to cross the street, and I walked holding onto Florence and feeling very shaky. But when we left, Julie said that the car was around the corner, and I decided I could walk to it, which I did, very slowly, stopping to rest a few times; it was a lot further than the distance I walked yesterday.

When I checked my calendar earlier, I was surprised that my acupuncture appointment with Anne was for tomorrow (I had remembered it as Wednesday, as it was last week). She will be here at noon, and the Boston Globe reporter is coming at one thirty, so I should be feeling nice and relaxed when she is here.

Going out two days in a row!

I was expecting to feel exhausted after yesterday's excursion, but to my surprise, and delight, I'm having a pretty good day. So good that I am planning to go out later this afternoon to get a much needed pedicure--my toenails haven't been cut for months, and they are getting so long it is uncomfortable. Plus, I find having my feet taken care of to be one of the most pampering experiences imaginable.

Ann has been here all morning and we cleared out some piles of stuff that were in the way and making it difficult to get things set up optimally. A few weeks ago Marty had the idea that a hospital-style bedside table would work much better than the bed tray I've been using. He mentioned it to Kathy and she said that hospice could take care of getting one delivered. In fact, through some mix-up, two different companies each delivered one, and we are still waiting for one of the companies to come and pick up the one we're not using. Now that there is space for it, I have the table arranged so it can go either at the side of the bed, or swivel around and go over the bed (ideal for eating or working on the computer).

Yesterday, Florence, Marty, and I worked together on the Sunday Times crossword puzzle, and finished it--we all agreed that it definitely needed all three of us. Marty disdains to do the Boston Globe puzzle, but Florence and I did that one, too, and today, in the course of clearing up one of the piles, I discovered two partially done Sunday Times puzzles, so later we will definitely have a go on those!

Although I still get ridiculously winded from any little exertion, I'm not feeling the overwhelming fatigue I was expecting to feel after a day out. Yesterday, well into the evening I took a nap (the urge to sleep coming on me quite suddenly), and also got a pretty good night's sleep, and when I woke up for good this morning I could tell it would be a good day. Florence, who habitually walks three miles every morning with a friend, went out with Julie and the dogs at seven-thirty for a long walk (I'm not sure how the distance compares with her usual walk). I tell her that even though she is eighty she is clearly a lot younger than me, since the twenty or thirty feet I walked yesterday from the car to the restaurant was my idea of a long walk!

A little while ago I got a call from a Boston Globe reporter, responding to an e-mail I sent the other day in response to a story she wrote on how even people with health insurance are finding themselves having to pay higher and higher out-of-pocket costs. I told her how my insurance is unwilling to pay for more hospice services, but instead will pay much more to put me back in the hospital, where I don't want to be, and as a result she is coming here tomorrow with a photographer to do a story! I hope this will embarrass someone at United Health Care into doing the right thing.

Today I'm feeling a lot of anger at being in this situation, and, as I try to do with all my emotions, I'm letting it out. It really is a rotten deal that I am so sick and so weak at an age when I should be still traveling the world and doing the work I love. I want to yell, and curse, and cry, and I am doing each of these things as they come to the surface.

I expect the pedicure will help me mellow out. I'm going to a salon that I've never used before, which describes itself as having an old-fashioned, cozy ambiance. Being pampered is something good I can give to myself, something I really need right now.

Sunday, May 3, 2009

Getting out of the house

I can't even remember the last time we were out, but this afternoon Florence, Marty, and I went to Changsho, a wonderful Chinese restaurant in Cambridge, for their Sunday brunch. I'm continuing to feel better, still getting tired after every little exertion, but with good spirits.

Florence arrived with Julie and Jim yesterday in the early afternoon and we sat and talked and just enjoyed being with each other. I wanted to take a shower, but was having trouble getting up enough energy, and didn't finally do it until well into the evening (as usual, when I seem to get an energy spurt). But until then we just hung out together. Marty was visiting his friend Donna and was gone pretty much all day, but I was alone for only an hour or two, so that worked out all right.

When I got hungry, Florence helped me to heat up a portion of my potato casserole, to which I added some frozen green beans. It made her laugh while I was eating it, because with every bite I kept saying, "This is soooooooo good!" I had asked Julie and Jim to bring me a slice of the fabulous lemon pound cake from Rein's, and later I ate that too (Florence had a taste and agreed that it was something that sounded like it would be ordinary but was really spectacular--she said because it was intensely lemony instead of just somewhat lemon flavored).

She decided she did want to sleep down here as she wants to avoid using the stairs as much as possible (her knee is still not right from the last time she was here). She does not want the cats in the room and they seem to know it--they will try to sneak in but when she tells them to get out they leave (and come to cuddle with me and Marty). Like many of the doors in this house, the door to that room does not latch well unless you really make an effort, and unless it's latched tightly the cats can get it open.

It's a cool, overcast day, but the trees are beginning to leaf out and flowers are starting to bloom, and it all looked so beautiful. When I first went into the hospice program, I remember saying that I wanted to live long enough to see spring, which certainly has happened. Julie and the kids have been working in the garden and lots of things are blooming. Last year they planted several clematis vines along the fence by our outdoor table. I wasn't sure last fall if they would survive--they looked a bit questionable, but now they are leafing out beautifully and have buds, and I'm hoping that soon the fence will be covered with flowers. We also have an archway covered with tiny climbing roses which should be in bloom next month. And Julie said she's planted lots of irises, which are my favorite flower.

I seem to be able to get a better focus on the good things ever since the Reiki treatment on Friday, which is very important for my overall well being. Finding the things to value and savor--whether it's good food, cuddling with the cats, enjoying the flowers, or, most important of all, the love of Marty and my family--is what I need right now.

Saturday, May 2, 2009

Symptoms and emotions

This morning I have been doing a lot of coughing, which makes me very tired and gets my heart pounding. It's a productive cough, bringing up lots of gunk, which is at least better than the dry, hacking cough that I haven't had for awhile. I took my morning dose of cough medicine and I think the coughing has finally stopped. I think I will talk to Kathy about a "Plan B" for these sustained coughing attacks, maybe another dose of cough medicine or some straight codeine, or maybe something else--I'll see what ideas she comes up with.

The important thing is that my spirits are still good. I got a pretty good night's sleep--I woke up a few times, but each time got back to sleep pretty quickly, and I was glad to see that Marty was soundly asleep (the first time I woke up I switched off the TV, which sometimes wakes him up, but this time it didn't). That's the best night's sleep he's had in awhile, and he needs it.

Marty brought be a great surprise yesterday--he stopped at the Popeye's in Kenmore Square (amazingly, finding a place to park) and got biscuits. As I suspected, they are better than KFC's, although still not quite the flaky ideal. I had one last night, two this morning for breakfast, and still have a few more. It is just one more example of how good he is to me.

Julie called an hour or so ago, to report that they had left Florence's house at six A.M. and were already at Rein's Deli (our usual stopping place near Hartford), where they were having breakfast. Once they get back on the road it's about another hour and a half.

I've managed to hang on to the good spirits of yesterday, even through the worst of the coughing this morning. I feel tired, but still upbeat. And things will surely get better once Florence arrives.

Friday, May 1, 2009

My first Reiki treatment

This morning started out badly. I woke up at around four, and not wanting to wake Marty, went to lie down and read on the daybed in the office (eventually I fell back to sleep). Marty woke up at seven, surprised that I had moved, and assured me (not for the first time), that it was fine for me to turn on the light if I couldn't sleep and that it wouldn't wake him. So I will try that next time--he has so much trouble falling asleep that I want to make sure he gets as much sleep as possible.

I was feeling extremely weak and shaky, and emotionally distraught. Marty helped me back to bed--I read the papers for awhile and he made my breakfast. There were still two biscuits that he had bought in KFC the other day. Yesterday I suggested he try twenty seconds in the microwave, which didn't get them hot enough, so today he tried forty seconds, which got them nice and hot so the butter melted well, and they didn't have that funny aftertaste. I really enjoyed them even though they are not nearly the biscuits of my craving.

I told Marty how bad I was feeling emotionally, and that I hated putting him through all this, and he reassured me and said he needed me, and if this was the condition I was in, that was just the way it is. I feel so lucky to have him in my life.

Ann arrived and started putting things away in the kitchen and did a load of laundry. I was waiting for Kathy, who said that the Reiki practitioner would be coming the first time while Kathy was there. Once Kathy finished checking me out, she hadn't yet arrived, so she called her and helped her find my house (she had the wrong house number). Her name is Angela and she told me that the treatment was designed to mobilize energy, and that she would say very little but that I could talk if I wanted to. She sat next to the bed and very gently put her hands on my knees, and then, after awhile, on different points on my legs, and at times not quite touching me. Like acupuncture, it had a very calming effect. I'm not sure how long she was here--probably somewhere between half an hour and an hour, but I could be wrong. She said she could give me another treatment next Friday, and I told her I would like that a lot.

Once she left I felt calm and relaxed, and also had a lot more strength. I asked Ann if she wanted to help me cook the potato, ham, and cheese casserole that I like so much, and we spent some time doing that, with me seated and doing things like peeling and slicing potatoes and onions, and grating the cheese, while she did the stuff that involved standing and lifting. It's in the oven now and I'm looking forward to having some soon. I find it quite amazing that I went from the way I was feeling this morning (when I needed to have Marty help me get back from the bathroom to bed) to being able to do this cooking.

I hope that with all three of these alternative treatments (acupuncture on Wednesday, massage on Thursday, and Reiki on Friday) that I will be able to feel more energy and be able to recapture some of the ability to enjoy the little things of life that I just haven't been able to do for awhile. Having Florence here will be good, too.