What goes down must come up

Things were bad on Sunday, but they've improved and I've been feeling relatively good since. I guess I just have to allow myself some occasional attacks of the blues. It doesn't do any good to suppress my feelings, even the most negative ones; I think it's important to allow myself to feel whatever I'm feeling, which I think is the best way to bounce back from these episodes.

My biggest problem the last two nights has been sleeplessness. I usually take two amitriptyline in the evening to help me sleep, but I ran out of the medication the other day; and it has been working less well recently in any case. When Lauren was here on Monday we discussed increasing the dose from twenty to thirty milligrams, and I'm going to try the new dose tonight. Lauren and the hospice doctor suggested I try an antidepressant that is also used as a sleep aid, but after doing a bit of Web research I decided this was a drug I didn't want to take.

In addition, last night I had an arthritis flare-up, which doesn't happen very often; Celebrex has been a wonder drug for me, and these flare-ups are quite rare, and usually subside pretty quickly. But starting on Tuesday evening and all through the night I was aching all over--knees, elbows, wrists--which also made it hard to sleep. I think I finally fell asleep around three AM, and then had a series of bad dreams about being in various kinds of pain and discomfort, which I guess was a representation of what I was feeling. I'm hoping it's over--I'm not feeling any discomfort right now.

I've been a problematic sleeper most of my life; oddly, since I've been so sick I've been sleeping better, probably because I get so tired just from breathing. So I'm hoping that tonight, with the sleep deficit I've been building up, and the increased amitriptyline dose, I'll get some good, sound sleep.

Things are moving along with the celebration, which is now just eight days away. A bunch more people have RSVP'ed, and we're now well over a hundred attendees, including many people whom I haven't seen for ten years or more. It's been really great to see how many people that I've worked with over the years want to be a part of this. Marty has been working hard on lots of details, including name tags which identify people both by name and by their connection to me (since many people won't know one another, we thought this would be a good icebreaker).

Julie is driving to New Jersey on Friday, and will spend Friday and Saturday nights at Florence's house, and then drive back with her on Sunday. It will give Julie a mini-vacation, which I think will be a good thing for her. I am so excited about seeing Florence, who will be staying here for a week.

I'm expecting Nancie (as she's told me she spells her name), my home health aide, to be here soon; I'm looking forward to a shower and feeling clean. And tomorrow Laurel is taking me to get a pedicure.

A thoroughly miserable day

Most of the time, when people tell me how "brave" I'm being, my response is that while I certainly didn't choose to be in this predicament, at this point I have only two choices, I can choose to be miserable or I can choose not to be miserable, and I choose not to be miserable. But yesterday was one of those days when I felt totally miserable.

It all started when I got up to go to the bathroom, which is only a few steps away from my bedroom. Usually I can negotiate this without too much difficulty, but on Sunday morning it just knocked me out and I barely made it back to bed, gasping for breath. When I'm that weak, I can forestall the gasping if I remember to move in super slo-mo, but of course I don't realize I'm that weak my first time out of bed for the day.

As a result, I spent most of the day in bed, only venturing into the living room in the evening. I was feeling guilty for having Marty and others wait on me, and kept apologizing to him, to Julie, and to Florence (on the phone) for being such a burden and causing everyone so much trouble. I knew I was being a pill but was just feeling sorry for myself.

Probably the reason I was so tired is that Saturday was a busy and good day. In the morning, Julie took me to my hairdresser to have my hair cut. The same woman, JoAnne, has been cutting my hair for about four years, and she knows just how I like it. I hadn't been for a haircut in a long time and JoAnne commented on how long my hair had grown, and I told her to keep it long but to even it out and put lots of layers into it to encourage the natural curl. When I got home Marty was really pleased with how it looked joked that I shouldn't let my head touch the pillow for the next two weeks so it will look good for the party

Also on Saturday, Marty went to pick up his friend Donna and bring her here, with the purpose of them working together to reorganize a lot of things in the house to make it more convenient for all the changed circumstances--my needing a better set-up in the living room for my chair, and Marty needing things rearranged to meet his needs now that he's living here full time. Donna and Marty have been friends for many years and she's become a good friend of mine as well. I spent most of the rest of Saturday resting after my excursion, but in the evening I suggested we all go out to dinner (I had stayed dressed), and we went to a nearby Chinese restaurant.

Donna spent the night in the guestroom/office, where there is a day bed, and she and Marty worked all day Sunday, occasionally consulting me (for example, whether I would mind if they discarded by big office swivel chair, which is broken and therefore uncomfortable, which of course I didn't). I had called Judy to ask if she had time to spend with me on Sunday so Marty and Donna could work uninterrupted, but she wasn't available, and when she tried calling Diana, Patti, and Ann to see if any of them could come (in her new role as coordinator), she couldn't reach any of them. So I had to keep interrupting Marty when I needed anything, which contributed to my feelings of guilt and of being a burden.

Marty was concerned about needing to take Donna home, not wanting to leave me alone, but fortunately Caren called to ask if she could come spend some time with me, and I asked her if she could do it early in the evening, which worked out for her and solved the problem. I was beginning to feel a little stronger and asked Marty to get me settled in the living room before she came, so I got to see the results of the work he and Donna had done. They'd moved things around so that my chair, instead of being in the middle of everything, was arranged comfortably in a corner with a small table to one side, a lamp, and the rolling hospital table on the other side. I was very pleased with this arrangement, which also makes it easier for other people to sit with me, and not have to squeeze past me in the middle of the room.

I told Marty it would be all right if they left before Caren arrived, and she came shortly afterwards. We talked for awhile, and watched some of "Sixty Minutes," and by the time she was thinking about leaving Marty was back. I was feeling better than I had all day and told Marty that I was sorry about having been so difficult earlier, and he told me that no apologies were necessary and that he knew I wasn't creating problems on purpose.

Julie had been popping in and out all day, starting pretty early in the morning when I was feeling terrible. She made sure that I was taking the right medicines (starting with a nebulizer treatment and putting the bi-pap mask back on). She, Jim, Kyle, and Vivian were out for most of the day (Kyle had a Pokemon tournament and Viv and Jim went to a movie), but she called several times and came in again when they got back. She also got me a new computer, one of the tiny netbooks, but I'm not sure whether that's what I want so it's in the carton for now.

As often happens, late in the evening I was feeling better than I had all day, and we stayed up pretty late, and then I had trouble sleeping. But I feel pretty good right now--it's early morning. I'm just going to remember to go to the bathroom in slo-mo, just to be sure.

Getting everyone on the same page

Yesterday we had a big meeting with all my hospice staff (Lauren, Louise [the back-up nurse], Katrina, and Marie), plus Laurel and Ann [Judy was on vacation], and of course, Marty, Julie and Jim, and me. The idea was to make sure that everyone had the same information, knew what to look out for, when to call hospice, and were coordinating with each other. I was having one of those days when I was just feeling very tired, and I sat in my recliner, often with my eyes closed. Some people thought I was sleeping but I told them I was listening, and I am sure I was awake the whole time. It looks like we'll now have a schedule with someone here from about eleven in the morning till seven or so at night, every day, whether Marty is here or not. This should take some pressure off him as, even if he is here, there can be someone else taking care of getting me the things I need, and just generally keeping me company. There's also going to be a log book where people can leave notes for each other to make sure information gets shared.

At this point, I still feel that I can make most of my own decisions, but I know there are days that I can't (like the days when I had that fever); and in the future I'm sure I will need substituted decision-making more. The important thing is that people are carrying out my wishes for how I want things to be.

After that it was a pretty quiet day. I had called Lisa to reschedule my massage, because of the meeting, so she is going to come today instead. In the afternoon, I had visitors--Joe, Helen, and Cheryl, who are involved in the local self-help organization, and we talked for awhile, but I was getting tired and I think actually did start falling asleep, so they said they didn't want to tire me out, but it was nice having conversations that had nothing to do with sickness or "important" things--we talked about stuff like movies and TV shows we liked (and discovered a shared fondness for the old TV version of "Mission: Impossible"--not the movies).

Wednesday evening I surprised Marty by suggesting we go out to dinner. I hadn't been out of the house for two weeks, and after my shower I was feeling really good. We went to a nearby Greek restaurant where I had a dish I really love--lamb shank braised till it is falling off the bone. It was nice being out and I didn't even get that tired.

Tomorrow I will be going out again to the hair salon, and I need to find someplace to get a pedicure. The place I used to go may be closed (I tried calling and got a "this number is not in service" recording), so I will have to call around. I could go back to the place I went last time but I think I really prefer the whirlpool bath to having my feet just soaking in a big basin). It's funny that with all the "important" stuff going on, this is what's important to me right now. And anything that makes me feel good is something I should be doing.

Things are coming together

Julie, Jim, and the kids were in Texas all last week. They got back on Saturday, and then took Evelyn up to Maine, where she will be in camp for two weeks. On Monday and Tuesday, Julie spent a lot of time e-mailing and on the phone with the caterer, and it looks like the menu is pretty much finalized. The caterer had sent me some suggestions but I just felt too overwhelmed to deal with it, so I am so glad that Julie has taken on responsibility for this. Joan at B.U. has also been extremely helpful in getting various departments at B.U. coordinated (not just catering, but also buildings and grounds, and audio-visual). Since a lot of days recently my brain has just not felt engaged at all, it feels great to have so many people helping.

This morning I was coughing a lot, but it slowed down by mid-day. I spoke with Lauren, who spoke with the hospice doctor, and they are going to put me on a ten day course of antibiotics. I know from my past history that my lungs are breeding grounds for infection, which can cause a lot of coughing and make me feel weak. The aim, of course, is to make me feel more comfortable.

The new home health aide, Nancy, came today--she is definitely not allergic to cats but is, instead, a cat person herself. A few days ago I didn't feel strong enough to get into the shower, even with help, but today I decided that I was strong enough to try it, and a shower is definitely preferable to a bed bath (although I'm sure that in the future, if I'm feeling too weak for a shower, a bed bath will feel really good, too). Nancy didn't mind getting wet, and she helped to wash me, shampooed my hair, and then got it all combed. I have an appointment on Saturday to go to the hair salon to have my hair trimmed and layered, which will help it to curl more. I want it to look nice for the party.

Nancy will come for two hours once a week--in addition to bathing me, she can change linens, make the bed, do laundry, make my lunch, and similar chores. Lauren says that in the future I might need her more often, but for now once a week is fine.

Marty sent out another round of reminders and a lot more RSVP's are coming in. Last week, when I was feeling so sick and exhausted, I didn't know if I had the energy to go through with the party (even though other people are doing all the work), but now I am really beginning to look forward to it.

A little better, a little stronger

Today is the first day in quite awhile that I've been alone, and I'm managing all right. Marty had to go out to a doctor's appointment in the mid-morning, and Laurel was supposed to be here as soon as she finished with some appointments, but things must have taken longer than she expected. Marty has called to check in several times, and right now he's getting his hair cut before heading home.

I'm still having problems with coughing and irregular breathing. I called Lauren a few hours ago, and she suggested that I concentrate on trying to breathe slowly and deeply--in through the nose and out through the mouth, to try to bring the spasming under control. It's working to some extent, and I definitely feel less weak than I have been feeling for the past few days.

Things are coming together for the celebration--RSVP's continue to trickle in, and today Marty is sending out reminders. It looks like it will be a bit smaller than I first envisioned, but there will be lots of people there that I haven't seen in awhile and will bring together people from many different segments of my life.

I got a lot of sleep last night, but Marty didn't come to bed till very late. So when I woke up around seven, I was able to come into the living room, turn on the air conditioner, and get myself settled in my chair. Marty woke up around eight, very confused at not finding me in bed, but I wanted to make sure he got as much sleep as possible.

Although I feel somewhat tired and weak today, I am much stronger than I have been over the past few days. I've been able to go from the chair to the bathroom and back without feeling totally exhausted by the effort...these days, I guess that's about as good as it gets.

A bad day, then a better one

Yesterday I was so exhausted that I never really woke up until about two in the afternoon--I would be awake for awhile, and then drift off to sleep again. It was all because of these coughing fits, which are set off by exertion (sometimes just a tiny thing, such as sitting up) and make me feel like I am choking. It's a very different cough from the deep chest cough--this comes from much higher up in the chest and is like a spasm. Once it gets started it's very hard to stop, and it leaves me gasping for breath. I guess that's why I kept falling asleep.

I was on the phone with Lauren several times who has fiddled with my medicines trying to find some way to stop the coughing, and I think by this afternoon I am definitely coughing a lot less. In fact, by about three this afternoon I realized I was feeling markedly better. Part of it is probably the medicine, and another part is the treatment I got from Barbara in the early afternoon--whatever it is that she does it leaves me feeling very relaxed, and really mitigated the exhaustion I've been feeling.

Laurel was here a good part of the day, and she and Julie took a look at the stuff that I got from the caterer at Boston University, and started putting together various proposed menus at different price points. I knew the food at B.U. is expensive, but it's also good, and I want the event to be really nice. On the other hand, since it's an afternoon gathering, there really doesn't have to be a lot of food--I can't imagine people will be wanting a full meal at that hour.

Julie, Jim, and the kids got back from Texas late in the evening yesterday--Viv and Evelyn came down to ask if I was asleep (I wasn't) and they each gave me a big hug. This morning Julie and Jim took Evelyn up to camp in Maine for two weeks.

Right now I feel stronger than I've felt for several days, although the long-range trend is that I'm gradually growing weaker. But it definitely feels good to feel strong enough to walk to the bathroom without feeling like I've taken a major hike.

Lauren called this morning and said she has found an aide, Nancy, who is not allergic to cats, and who will come every Wednesday afternoon to bathe me. She said that the frequency could be increased if I need it more often. I'm not sure if I want to try taking a shower, with assistance, or whether it's better to be bathed in bed. And one way or another, I definitely need my hair washed.

Also, the vet, Dr. Leavy called, and wants to talk with Marty about managing Gilbert's heart disease. Since Marty will eventually be the person responsible for the cats, it makes sense for him to deal with her directly, rather than relaying messages through me. Right now, when I'm feeling a little stronger, I feel like my mind is working again, but this morning I felt confused and unable to think clearly.

This morning when Marty was getting me my breakfast I said I'd give anything if I never needed to have breakfast in bed ever again!

Slowly getting weaker

Yesterday I spent most of the day in my recliner, sort of watching TV but mostly dozing. Ann was with me all day as Marty had a number of errands to run, including finally getting grocery shopping done which he's been trying to do all week. The weather has turned hot and muggy (yesterday it rained hard a good part of the day and it's less muggy today, but still hot), so I'm very grateful for the air conditioning--without it I'd have real trouble breathing.

In the morning I took a stab at the Times crossword puzzle, but didn't get very far (the Friday and Saturday puzzles are the hardest of the week), but I kept going back to it during the day and each time was able to fill in a little more, and by evening I had completed it. It's very strange that you can find yourself completely stuck, but when you pick it up an hour or two later there is often something new you can fill in. So I guess later I will try today's. Marty is out again all day today to be with Donna--today's the day her brother's ashes are being scattered at sea down near Plymouth. Ann is with me all day today as well. Yesterday she finally got the sweaty sheets off the bed that I'd been wanting to be changed all week (Laurel couldn't do it because of her wrist, and it's too much for Marty--I had been expecting Susan to do it, but she never showed up). Ann took the sheets, the duvet cover, the pillow cases and shams and got them all washed and the bed freshly made up, and it felt so different and so good!

On Thursday hospice sent over a home health aide (I forget her name) who was supposed to give me a bed bath and change the sheets, but when she got here and discovered I had cats she said that she was very allergic. She didn't want to touch my bed and gave me a sponge bath in the bathroom, and brushed and combed my hair till all the tangles were out. Lauren is working on getting me another aide, who will come weekly to bathe me and change the sheets (and who won't be allergic to cats).

Right now my worst symptom is coughing (again). It really tires me out. The new medicine doesn't seem to be helping and I've been coughing up blood-tinged gunk all day. I just took some cough medicine and if it doesn't stop soon I will call hospice and talk with whomever's on call. These coughing fits start everything vibrating inside my chest and make me feel incredibly weak.

Late in the morning Caren stopped by and she, Ann, and I chatted for awhile. I asked her to work with Ann to fold the sheets (I have king size sheets which are hard for one person to manage), so now those are put away. Caren said she'd check with Marty to see how things are going with keeping track of the people who have replied that they are coming. I think this week we will send out reminder invitations and encourage people to let us know that they're coming, as we need an accurate count.

My stomach is pretty much back to normal and I'm eating a wide variety of foods again. Karen brought me some muffins from Quabrada Bakery (she knows how much I like them), and for lunch I had Ann go out to a nearby Italian place for one of my favorite sandwiches--grilled chicken, pesto, fresh mozzarella, and tomatoes.

I napped a bit during the morning and will probably sleep again during the afternoon. I have no energy at all.