Day 287 - return of the basset

I think I might be getting old because I am having a harder time sleeping in even when I am tired. I just automatically wake at 0600 or so without an alarm and can't seem to get back to sleep. I have heard this complaint from many an elderly woman. I don't mind because one of my favorite things to do is lie in bed and stretch a bit then roll from left to right to left and think about stuff and yawn and I could do that easily for a couple of hours if the house is quiet. I think I may really have fallen asleep, but who knows? I didn't feel asleep.
I was halfway up a narrow steep flight of stairs. They were dusty and at the top was a little landing where the stairs turned around and a huge round window with sun pouring through. I don't know why, but I was really afraid to go up the stairs. I could hear the sound of a dog's nails scrabbling around on the floor above me.
"Agnes? Is that you?"
No answer.
I lifted one foot to the next riser and shifted my weight up. Other foot. I felt each step in exquisite detail, the way my shoe felt when it hit the stair, my thigh muscles contracting to lift up my weight. Even though I thought Agnes was up there, I was terrified. I don't know why. I could feel my heart pounding in my chest and my neck. When I got to the top, it wasn't a landing but steps that curved around and the ceiling was really low and I had to lean way over. There was a very dusty, dark room at the top and Agnes was there!
"Agnes, I'm so happy to see you! Why didn't you say you were here?"
"That wouldn't have been honoring your fear."
At the time she said it, I knew just what she meant. Now, I have no idea.
I sat on the floor and scratched behind her ear; it was so incredibly soft and then I pulled her into my lap. She scrambled out and sat facing me. I couldn't figure out why she did that.
"Agnes, tell me what's going on!"
"I'm a dog," she said, "I can't talk."

So, what, I wonder, exactly am I supposed to make of this? I am doing some new (and, yes, kind of scary) stuff in a couple domains in my life that I don't really want to talk more about. I'm sure that brought her out. Was I supposed to find her visit encouraging? I wish I understood more what "honoring your fear" might mean.  I found it more helpful when Agnes provided me with more direct advice, but it was nice to see her. I had wondered a little bit if she would make a repeat visit and certainly when.
And, really, isn't that maddening? "I can't talk." Yeah, and I can't type. Geez.

Day 240 - just the usual, ma'am

Today was a fairly normal day. The census in the Hospice House is down so I actually didn't work as long as I had planned today. I used the extra time to go to Planet Fitness and ride the elliptical. I am happy to report that I can now tolerate exercising to the official heart rate limit for my age. Remember how after I first got out I'd be only able to tolerate the 70 year olds' limit? Yeah, for the passage of time! I have been turning over in my head learning how to use the weight machines as I am still down in upper body strength for sure. I think my lower body might be back to normal.

I called my fellow AML patient in Lebanon today. He's doing well, about three weeks out, getting a little return of marrow activity. He said he was reading the Agnes Day piece when I called. The nurses put it on a bulletin board on the station which is awfully nice. He said he could really relate to the fevers and chills part, but it didn't feel right to ask him if he had been visited by any spirit animals.

Other excitement for today is I started my new warp. Weavers in general have to say to themselves a lot of things like "I need twelve which is really six" or "There are four which is sixteen" and double weave doubles the number of times one has to add in multiples of two or sometimes divide by two. I did the first three stripes of my new warp and realized that I made them twice as wide as I wanted. I will get the rest correct and when I put it on the loom, I'll just have to throw out half of the first three stripes. It is much better than having done it too narrow at which point, I'd have to unwarp and rewind all that yarn. And, don't forget, when you unwrap 600 inches of yarn, be careful how you wind it so it doesn't snarl!

This is the warp in question. The black, blue and black stripes closest to the bottom are the problem ones.

The rest of the warp colors are lined up and waiting patiently for their turns.

I was listening to a description of the new USPSTF preliminary recommendations about screening for intimate partner violence (the new name for "domestic violence"). It discussed the adults who they feel are at risk: women of childbearing age and the elderly. This means that the only age women are not felt to be at high risk is roughly fifty to seventy. I guess this is something else that (temporarily) gets better with the passage of time. What exactly does this say about our society that over half of the citizens are felt to be at high risk of violence for almost all of their life? I am not entirely sure, but I don't think it's a good thing.

I'm still reading "What have you lost?" One of the poems I read today is about domestic violence (parent/child; I'm pretty sure autobiographical). The poet says in her biography at the back, "Like everyone, she has lost many things, but believes there is one thing that can't be lost. The thing that makes us who we are. The one thing that is different for each of us." I was talking with one of the nurses today at the Hospice House about how the terrible experiences in our lives make us who we are as we learn from them (in her case, compassion). We were talking about how we wouldn't want to undo those experiences because they have made us who we are. It also makes me think of how very demented people sometimes go back to a prior traumatic experience and relive it over and over again. It would be a literal demonstration of not being able to lose the experience that makes them who they are.

Tomorrow, I am going to visit the dentist and then go to CMC and do some chart reviews for the cancer committee. Attending cancer committee was one of the last things I did before my diagnosis so I am expecting the experience to be a bit of a touchstone for me. I think the actual committee is later this week, but conflicts with IDG at the Hospice House so I will wait another couple of months for that touchstone.

For me, for tomorrow, I will hope for  happy touchstones and no cavities. For you, I'll hope for good dental hygiene but perhaps also a reminder of how far you've come.

Day 107 - sore legs, sore jaw

I mentioned earlier that there is a quite effective treatment for rigors--demerol. Demerol is an opioid like morphine or oxycodone, but has some properties that make it less desirable than the other opioids. It has a tendency to build up half processed medicine that then makes people likely to have seizures. It has to be used carefully so people don't get too much built up. Very early on, I had suggested demerol, but the suggestion was brushed aside, perhaps because I was rigorring constantly and enough demerol to stop the rigors may have been too much or perhaps because a full understanding of the consequences of rigors was not in place. However, around here was the magic day that someone said, "Let's get a demerol order" and it happened. Now, when I started to have a fever and began shaking, I could press my call button and ask for demerol and it would mercifully stop. At this point, I was pretty much of a mess. My jaw hurt more or less constantly and I could not walk without a walker because my legs were so sore. Even a little rigorring hurt my jaw more and my leg muscles which were already complaining about the marathon they'd run the previous four (five?) days, every time they tightened up and began shaking, they also began screaming because they were already so sore. It's interesting that this effect did not happen right away; it was like there were several days to collect the damage then I almost think there may have been a pause like six or ten hours without fever and then when the rigors restarted, they began to hurt.

/* trigger warning for mention of violence */
Rigors are funny because often if you concentrate, you can make them stop, but I can't make the muscle relax; I can just make it stop shaking. This is not all that helpful, but is a start. Anyway, I had had about two doses of demerol over the day and it was so helpful; then I started with yet another fever. Rigor, push the button, demerol, better but not completely better. I was lying there half awake shivering from time to time and Agnes began talking with me. "So, why do you have TMJ?"

"Because I've been beat up on in the past."
"And, you'd have to ask the people who beat up on you for help, right?"
"Yeah, but---"
"What would happen if you asked for help?"
"They'd tell me it didn't hurt; that I had never really felt pain; that I was a very wimpy person to think that was pain; that I didn't need help; that I was stupid for asking."
"Did these people here hurt your jaw?"
"No, but--"
"Are these nice people?"
"Yes. So you think I should ask them for help?"
"Yes."
So, I did. They, very matter of factly, gave me a second dose, I felt better and went to sleep.

In the interest of truth-telling, I have been beat up plenty by "care givers" but actually have TMJ from jaw clenching and tooth grinding (some in response to treatment by "care givers") so what I told Agnes Day was not, strictly speaking, accurate, but is what I told her.

I wonder if I would have been able to get myself to ask for a second dose without Agnes' help. I am not sure. What is known is that being ill, being febrile and one dose of demerol can erase thirty years, three degrees and countless hours of therapy, but one very decrepit, hyper-Catholic, sixteen year old Basset can restore the balance.

Thank you, Agnes. I wish you a long life, for my own benefit as well as yours. For everyone else, may you have people who can nudge you in the direction in your life always.