Reward

Obviously the most important image on this post is of my almost eaten meal of salmon. PROTEIN. I am not a great fan of protein at best, eating low fat cheese and beans, a little chicken, so I'm probably always low on this fuel. But recently, my attempts at eating it have been very sad, though I could manage to drink the box of peach protein-added gunk (with how many other unpronounceable additives) with lots of ice in the hospital.

But this salmon was my reward for actually teaching yesterday, a feat managed carefully by C. who dropped K. and me off at a building close to the photolab that has an elevator and she walked me in and up the elevator, down the long hall, and got me situated. I had figured out that with 18 students, 3 hours, I could give each ten minutes (TEN MINUTES! holy mackerel!) to try to figure out what they've been doing and how they are managing. Luckily three got there early so I could cross them off my list. I took notes, got e-mail addresses, did the best I could, weakly. But I was glad to be there and happy that they'd had a good critique two weeks before with Margaret, who now had my position and had subbed for me.

By mid-class, I was tottering over to lay out images so I could see the relationship of the photographs. I was too directive, far more than I would have normally been, but in the case of some folks, it seemed necessary to convince them that their projects were interesting and that they should look at more images than they'd chosen, or pare down some, and narrow the focus, etc.

I'm very glad that I didn't stay home. I felt very weak in the morning, having had a couple of nights of increased problems, and would have given anything just to lie there. But, going out was a good decision.
But at 4:30, when I'd seen the last person, I thought of some cheap, chain restaurant (I don't trust the quality of food in them,) but I couldn't imagine where else to go since I was really out of fuel. Fortunately, I remember the Victoria, a restaurant that's changed hands twice in the last few years, since it was sold by the man who'd kept it going, a neighborhood institution for decades. The young guy who waited on us (he looked like an actor) said that the waitresses were still there, those women who'd worked for twenty, thirty years for the same owner. 

The menu has gone upscale, pages of possibilities instead of the old, spare double-sided menu. The breaded sole is long gone (he laughed at the idea of such a pedestrian meal), but recommended the salmon. The side order of squash is no longer light in color, bland, but has gotten dolled up and tasty. But the same booths line the front section of the restaurant, giving the appearance of a diner. And the front windows look onto the traffic of Mass. Avenue, and we sat at the back, watching the rain.

The photo with the roll is particularly important. I asked C if he would order me a roll, having the distinct sense that I could starve to death within three minutes if I didn't get something to eat, causing him to get up yet again to fulfill one of my needs. (He must be so tired of me.) And we got three rolls. But what's important is that bit of marinara sauce spilled on the table behind the water glasses. They had lighted breaded zuchinni sticks and I was only allowed to taste one. I could have eaten the whole plate though that would have been a very sorry idea.

That morning I had finally figured out why I've been having middle of the night problems -- taken a worrisome direction. Sour Cream! I'd had it on three baked potatoes, one a day, thinking that when the doctor in the hospital said I could have a little milk in my coffee (I prefer lattes with a shot of espresso), that meant I could have sour cream. I can't. So, my breakfast of baked potato and sour cream had not been agreeable and C. had to stop at Panera and get me three pieces of country white bread with margerine and jelly that I could eat in the car, tossing the crusts carelessly out of the window. That was before we picked up K. at the bus station and then drove out to UMass for my afternoon.

Since I've gotten so much better (relative term), I've been riding myself of little collections....the little stuffed dolls, a rabbit someone once sent in a package for Easter.

And the collection of small metal boxes that I was saving because someday I just might make them into pinhole cameras and use film in them. What an absolutely insane idea! I have read through half a self of books in the last six weeks...gone books. And tossed out three bags of the endless papers. And dumped some clothes. It's slow. I can't tackle much. But it's a start.


After I ate the salmon, C. commented on how anyone could get well on a diet of inari and Goya Maria crackers was beyond him. And he's right. But that was the food I could tolerate. They would go to the sushi stand in Market Basket where the fellow would look up, nod and immediately begin to make four inari for me. Sweetened rice in a pouch. I wanted to eat all the ginger that comes with it, but settled for three tiny, tiny bits on each rice roll.  The Maria cookies (not very sweet) got me through long nights, as I watched PBS ("Salon Stories," a video about how this downturn has effected wealthy folks, assumedly secure in high paying jobs, on the seemingly unassailable upper east side of New York was quite remarkable....and played often at the odd times I was awake and eating Maria's) Not nutritious, but when you can hardly eat anything else, they taste really good....

So, the hunt for protein goes on. It's a problem if you don't feel like cooking and the restaurants in your neighborhood are really lousy. But that salmon tasted so good.............. Inspiring.

R.I.P., Lolly

I can't imagine how terrible it was for C. when Lolly got so sick, unable to even drink water, last Friday night. K. was away. I was just home from the hospital and still causing problems. And his beloved Lolly-Bolly, who he's had for sixteen years, since she was six weeks old, was clearly past managing any longer.

She's been, as he says, more like a piece of furniture for the last year and a half, but her tail wagged, she ate and walked out to the yard.

The day before, when the other three dogs were up here, I heard scuffling on the stairs and sniffing at the door, and there she was, heading for the kitchen for a treat. She hadn't done that for months.

I think it was enormously brave of C. to take her to the vets Saturday afternoon. I watched him carry her to the car. I know how much he wanted to take her home and wait for K. to get back, but he made such a good decision since she wasn't going to get the slightest bit better, and would only have suffered. When a vet doesn't offer to do any tests, you know the story.

She was a nice lady, Straffordshire Terrier. Much beloved by C. and K.

Pilgrimage

Well, the photos aren't in order. A problem that I have forgotten how to solve.

But this started out as a pilgrimage to return two bags of rocks that I carefully collected from Revere Beach, each seeming like a bit of sculpture that I just had to take home. Most were gray with edges smoothed by sand. Some were clearly shaped, angular. Each chosen carefully. Most returned yesterday by my daughter who also took the dogs for a walk on the cold windy beach. She's game for anything, I tell you.

Before that we went for breakfast at the Bagel Bin on Shirley Avenue. My Cuban friend would reward me with two eggs and toast after I took him into some hospital appointment. I love this place where lots of characters (my age or slightly younger, men, probably on the city council, sit around, drinking coffee. I had two eggs and four pieces of toast. They look pretty ghastly since I forgot to photograph them when they were hot and whole. K. and C. had more adventurous dishes. I convinced her to try the bread pudding that my buddy and I would often share. It's fabulous.

And the dogs and I waited in the car while K. and C. tried another pharmacist to see where to buy the protein drink that would be helpful. I find Happy, always eager to get into the front seat, into the action, into your face, onto your lap, into the plate, just a snack please, very comforting.

My second good outing!

8/10 Restaurant, Everett, MA

What a glorious restaurant, empty, a rainy day. They usually get a heavy take-out lunch business. The chef is excellent. The barman has a bit of a sense of humor. The owner sits at the bar, friendly and welcoming.

The health bill passed....it seems. I can't believe that anything sensible happened in this wrack-and-ruin system of objections. But I'm extremely glad and wish it safe continuance.

I heard my doctor and someone celebrating in the hallway, outside the exam room, on Monday. And I wanted to join in!

Meditation, I

This will undoubtedly be extraneous to most people, but necessary to write. Please don't feel you have to read it!

One of the attributes some people receive from prednisone is a mental clarity, perhaps raciness. Mine arrives in the middle of the night. This made waking up in the hospital at 1 am and watching the end of a Tarintino film, the sound mechanism under the covers, by my ears, just magical. Wasn't Samuel Jackson's dialogue brilliant? I would never have that understanding of this screen play if it wasn't on the TV at that moment. And now on to "Kiss, Kiss, Bang, Bang," oh, what a film that I unfortunately decided, by 3am, that I had to stop watching.

Sometimes the clarity led to watching Law and Order, one after another, again with the sound mechanism hidden just below my chin under the three, light, white blankets. 

Last night it led to an English muffin and thinking, meditating, about the lessons of this smack down. But not writing in the middle of the night, much as I wanted to. (I watched a PBS on Betty Ford and one on the Hawaiian Representative, Mink, the first woman of color elected.)

As a friend was saying recently, she's learned a lot by talking to friends about illness. This is something that I'm assuming, without much evidence, that women do more than men. And we get hints on what actions we might take, clues, support, good advice. I suppose that the web now provides a lot of information that many people search.

In trying to figure out what I've done, what I could have done, I have to start with the first signs of this smack down that I profoundly noticed, but didn't take to the doctor. I could have, actually should have, said, "Something's going on here. Let's do a colonoscopy." I didn't.

But, after the smack down, I acted as quickly as possible, annoyed at the Monday holiday, and worked hard to convince him that it was the colon. I was afraid he'd want to do every other test, also, and I wanted some control in pointing out the direction.

Control. That's the word. I'm not on the slippery slope yet, but I totally lost control. Of almost everything including those precious bathroom habits and the need to eat. That's frightening, especially to someone who experienced so little control, so many effects of this disease, in early teenage years. 

Lack of control has been my watchword, in many ways, as I careened along, making choices that almost always brought tasks I wasn't capable of managing, though I certainly pretended to be able to tackle them. The great pretense of the adult child of alcoholism.

I know I lost a dear friend over the last few weeks, and have learned NEVER to mention names in this blog, by talking about the ride to the colonoscopist. I have never gotten into a car, or almost never, without thinking it dangerous and imagining an accident. I'm phobic, sure this is born of being a person who rode with a drunk father, weaving too much, and lived in a house out of control, in frightening circumstances. The driving was probably the only fact I could hang onto because the other dangers were vague, explained away by a man who said I needed to have more sympathy for what the first step-mother had suffered as a child.

 Being in control is a car, being a passenger with a driver who is cautious and slow, especially when I haven't eaten, am so sick, frightened, and preparing to lie my pants off about how much of the medication I'd taken to get into that examining room and get my innards looked at, was something I needed desperately. I apologize profusely for complaining so nastily when I didn't get it, not that it will go any good, and regret the loss of this person who has done so much for me. I don't expect forgiveness is in order.

I learned, in the hospital, not be be terrified of blood being drawn, a habit I'd retained for years, always feeling anxious. It's just blood being drawn and that person is trying her best. (Yesterday the woman, who is so happy with the job that she's had three years, and has an eleven year old, did mine at the doctor's office without more than a prick. Her cabinet is decorated with little stuffed cats that one of her patients brings her every month.)

It made me wild to be told that surgery on my colon was a possibility. I know that doctors now have to give the various possibilities, but by the time I learned this for the third time in the hospital, I went nuts, asked for doctors to be called, told this nice third-year resident who is going on to a geriatric speciality, that I was bullshit, didn't want to be told this again. That I needed positive encouragement (I must have learned this from my daughter!) and she promised to put a big note on my chart. The doctor who had told me this twice (after my specialist, about to leave on vacation, had also told me by my bedside), thinking I had asked, apologized. Actually, he was one of my favorite people, wearing a ski vest, kind and unassuming. I'd take him as a doctor anytime, except at that moment. He wasn't a gastro doctor, who appeared later with every promise to protect me. And he did.

I certainly regret being so cross with Krissy and Chris who just couldn't provide anything that I could eat when I was trying the medicine I stubbornly demanded, not wanting prednisone. I was like the queen rejecting food after a few bits, certain it was because it had been cooked too fast, wasn't moist enough. I can't imagine what it was like watching me get worse and being unable to do anything. Clearly I let that go on too long. Clearly. I was so sick I couldn't stand the smell of anything, especially the dogs, but certainly food.

I was terrified, to the point of palpitations, of thinking about the hospital. I couldn't imagine it as a positive place that would offer a protective shield, kind care and solutions.     I was in negative over-drive and full of terror. I'd had one blood transfusion for ulcerative colitis when I was a teenager, taken by the step-mother to Chicago for one of her long visits to her second husband who never knew she was married to my father. The hospital was my respite from that situation, the colitis stopped immediately, but the transfusion was hideously painful and no one could help with that.

I know that certain people have specific skills. For some reason, my ability to accompany my Cuban friend to the doctor a year or so ago was a gift to him. I am calm in those circumstances, was capable of waiting during his long bathroom runs, listening to the doctors, providing some background, listening to his complaints and much horse talk. It was just a dove-tailing of my particular ability with his need.

One friend has been able to dovetail her calm ability to come into this embarrassing chaos that has gotten even worse over the last two months and pick up things, do the dishes. She is waiting for a knee replacement, so my steps upstairs are hideous for her, but she can bend down with  no trouble, and has come over twice, hung around for forty-five minutes, chatting and washing dishes. (I washed some in the middle of last night!)

Other friends have wanted to do errands, and I've refused because Krissy and Chris are so able, it's so easy for them to get in the car and snap something up, while for some of my friends, the sheer effort would be fifty times greater. So it must have felt as if I'm ungrateful, incapable of asking for help, rejecting their kind offers, but when you're so sick, you have to take the easy route and that's the young people downstairs. (I apologize for seeming so ungrateful.)

Yesterday I left for the doctor's at 8:15, was in the waiting room or office until 11, got his blessing that this is a slow ride that is heading upward, that I look much brighter than I did at the beginning of this trajectory downward, and that I have to go slowly. My appetite will improve, he promised. And by lunch time, as I dragged after K. and C. toward the restaurant, it had. I had a meal, delicious.....a real meal, in a tavern-like thing, the 8/10, in Everett. I have a photograph to prove it. I was up until 2:00.....able to get down hallways, talk to a doctor with my list of problems in hand, have blood drawn, ride in a car, give directions to poor C who agreed not to take the highway because I'm phobic. What patience. And I could creep along the sidewalk after them as they joked about getting to the restaurant long before me and ordering before I peered in the door. It was raining lightly and that felt wonderful.

I had been disconcerted by the hospital release form that said I was capable of resuming my life. Since I so welcomed the wheelchair ride down to wait for the car, I knew I was no more capable of resuming my life than I had been at the beginning. I was better, but weak. Very weak. (Perhaps I left a day or so early because the new woman in the next bed was so seriously, seriously ill. but the doctor's thought I could do it.) How had I failed? Why wasn't I like that nice little, lady in her eighties, who'd come in for a test and been admitted, so sick, but who skipped when she was released? (She still has many tests to go to find the reasons for her malady, but she was being driven back to the cape by her boyfriend and going to watch the ducks and birds at the many feeders he'd set up.)

I don't know how many friendships I have left. I have to go about strengthening them. And am thinking optimistically about the next ten years, which is where I was trying to start off five or six months ago. Try again. It's been fascinating. Hard. Frightening. I hope I've learned some lessons. Proactive is crucial. Faster proactive. Even faster. I'm grateful. Tired. Hoping I can teach on Monday. But before that, that I can walk around the block.... I haven't walked the dogs since the middle of February. 

I'm still not back to reading blog. But I'll get there. Thank you all.

Home and Weak and Thanks!

Thank you everyone who worried. I muchly appreciate it.

I'm sorry I'm not back to reading blogs yet, but soon, I hope.

This will be boring, so please don't bother to read on, but I wanted to write the details for one particular person and just can't do that by e-mail, too long.

The warnings for this attack of ulcerative colitis must have started three or four weeks before it wiped the floor with me on President's Day weekend. I got very frightened by the lower bowel pains which completely reminded me of my long history of ulcerative colitis, but there were no other definitive signs until that fateful Saturday, last time I walked the dog.

I tried to be as proactive as possible. Had an appointment with the doctor by Tuesday (Monday was a holiday), an appointment for the colonoscopy by the following Tuesday and an appointment with the specialist for the results by the following Tuesday. 

Unfortunately I didn't want to take prednisone, having watched the reaction a friend had, so I started with the next level down of drugs. Unfortunately, he didn't have the results of my blood test then. They showed very low potassium and very high inflammation, but two of the results seemed alright, blood crit and albumin?  

I can only imagine how awful it was for Krissy and Chris to try to cook for me and watch me eat only two or three spoonfuls, get weaker and weaker. Finally I decided that I had to go to the hospital, Thursday night a week ago, where it was discovered how dehydrated I was which changed the results of the blood tests. (I had no idea how dehydrated I was when I saw the specialist. That was the one area I thought I'd been keeping up with.

A great deal of work was done to get the potassium up to a decent level so I could take steroids. It would get up there and slip back by the time I got back from having a chest x-ray and I'd been back almost where I was at admission.. I can't tell you how many bags I was given intravenously.

(spelling, spelling, spelling, sorry)

It took a couple of days to get that straightened out and a few days for the steroid to begin working. It was definitely dicey and frightening.

One of the inevitable (so I've experienced) qualities of this problem is the uncontrollable poop. That happened twice before I went in the hospital, once there (I sat and waited for the nice lady dressed in green to clean the floor) and once since I've been back. It seems a small price given this whole ordeal.

What I was told by the specialist is that colitis is a hereditary inclination, with unknown factors that bring it on, sometimes stress is a factor.  The only thing I had to hang onto was a cousin of mine (we were separated at birth, a joke, and only met about twenty years ago) who had ileitis. That was the little bit of information that made the family history somewhat comprehensible. I hung onto that in this maze of being slapped around so surprisingly by this attack.

Ulcerative colitis had been my beast for many years, but I'd not had an attack for thirty years. This came entirely out of the blue, entirely. Knocked my socks off. What's a great surprise is that it will mean medication from now on. I'll be weaned off of prednisone slowly and put onto a maintenance drug of some sort.  

I can't emphasize how grateful I was to be in the hospital, what marvelous care I got on every level. I also got to lie there and look at these beautiful faces of people taking my blood samples or putting in another IV or checking my vital signs. I'm sorry it took me so long to get there, but there's no better hospital.

I felt very weak when I got back yesterday afternoon, thinking that I should have stayed in the hospital another day, but I was also just frightened, thinking that if I lay here, quietly, maybe I'd get through the night. I did.

And Chris and Krissy have been rustling up meals. The bland, no fiber diet is hard to take, so different from what I eat, but I have few complaints. (I'm so glad to have something that has a little taste. They have been very faithful which will continue with feeding me and driving me to various doctor appointments next week.At least I hope they think that the worst is over. It's been quite an ordeal for them.

I look forward to having energy again and feeling like being out of bed more. And I hope to get back to teaching, though that seems quite far away at the moment.

I want to thank everyone for visits and phone calls....and messages that I haven't yet read on the blog.  

Hopefully I'll have an interesting blog entry soon...