Praise then darkness, and creation unfinished

The three of us went out to the No Kings Yaas Queens combined Pride/NoKings demonstration today, despite my worries about my various joints. Or, at least, that was the plan. It didn't work out, but my knees, hips, and ankles are OK.

We got to Park Street and the Common, and found other people who were looking for the same event, a stage where someone was introducing the next speaker?performer?, and some tables and tents, but no focus. We wound up walking to the side of the Common next to the Public Garden, where we found the parade, smaller than we'd expected but with enough of a crowd I couldn't see much. So we went home, pausing moderately often to rest my joints and watch another bit of parade, which seems to have been heading for Government Center as originally planned, not the Common as we thought.

I'm both glad I went, and disappointed that I didn't actually make it to the first protest or rally I've felt physically capable of in too long.

I will probably update this tomorrow, to note how my joints are feeling. This afternoon, they've felt good enough for some PT exercises.

My right knee is healing, and stretching worked significantly better than yesterday. I even did a few carefully selected PT exercises this afternoon.

I can do more things standing up, and walking around the apartment is easier. However, I seem to have been leaning too much on the other leg, because my left knee started to hurt earlier. Not badly, but enough that I am putting the cane aside for the moment.

update Monday, 6/9: my knees feel mostly OK today. I am still being careful about walking a lot or standing too long. I just got the mail, figuring the two steps down to the mailboxes would be a useful check of how I'm doing. It was doable, but did hurt a little; I'm glad I decided not to go out. (The sidewalk is down another half dozen stairs, which are a bit more difficult than the ones inside, but the main thing is that this way I only had to climb back up two stairs.)

I heard from the GI doctor's office this morning, and have an appointment Friday at 10:30, which will be telemedicine. I hope my knees will be feeling a lot better by then, but if she had wanted to see me in person, I would have called a lyft and taken the quad cane with me just in case.

Two minor amusing things from a trip downtown this morning:

I saw (and rode) one of the googly-eyed trolleys for the first time.

And on the way back, an ad in a subway car for some AI thing. The headline is something like "offload the busy work." The steps given below that are "AI drafts brief" and "brief accepted." Almost anything would have been a better example, after repeated news stories about lawyers getting in trouble for submitting impressively flawed AI-drafted legal briefs.

The trip was to try on sandals at the Clark's store. There was one that was slightly two big, so I have ordered a pair in my usual style, to be delivered to the store, so I can try them on there and return them if they don't fit.

I stopped to grab some lunch at the Quincy Market food court, and then wrenched my knee while sitting down on some stairs in order to eat it. The trip home was not fun, but I came home, sat down for a couple of minutes, then got out last fall's cane and went into the kitchen to make tea.

I just had a telemedicine appointment with the gastroenterologist. Her office called at about 9:30 this morning, to ask if I was available for a 10:30 appointment, and I said yes.

The diagnosis is collagenous colitis, which I already knew from MyChart. The good news is that it's both benign and curable. The treatment will be nine weeks of budosenide pills, starting at three/day for the first six weeks, then two/day for the next three weeks, and a final three weeks of one/day. Those are to be taken with food, and in the morning because it's related to steroids and can interfere with sleep. [I mis-remembered, it's a total of 12 weeks of these pills.]

The most common risk factors for this kind of colitis are being a woman over sixty, and regular use of NSAIDs. Therefore, Dr. Morgan wants me to talk to Carmen about whether there's a plausible alternative to me taking naproxen almost every day, but she did say there may not be, since tylenol doesn't work the same way and may not be effective for the hip and knee pain I'm using it for.

I asked about continuing the Imodium and the fiber capsules, and Dr. Morgan said I could stop using them when the budosenide starts to be effective for the diarrhea, which might be within a week. I told her that the combination of Imodium and fiber is working well enough that I may not notice a difference, so the tentative plan is to wait at least a week, then pick a day or two when I won't need to go out, and try stopping the Imodium. (Adrian pointed out that I'm currently taking two pills twice a day, so I could try halving the dose and see how I feel. That sounds plausible, but I'm going to ask Dr Morgan if she thinks that's worth doing.

Also, a significant number of people with collagenous colitis also have celiac, so she wants to test me for that. I asked, and it's a straightforward blood draw, which I can do at my convenience: I don't need to wait until after getting blood drawn to start on the new medication.

She is sending the prescription to CVS, and told me to call her office if there's any problem with the insurance company.

ETA: I looked at the doctor's visit notes on MyChart, which reminded me that I should be checking my blood pressure about once a week while taking the budosenide.

A day or two ago, I was reminding myself that there's no wrong way to feel, no "proper" shape of grief. Today, well, I'm feeling calmer than I had been: not cheerful, but I really wouldn't expect to me. Even if I wasn't mourning, I still have the assortment of health issues, one of them depression, and the state of the world continues to feel dire.

In response to my post about Mom's death, one of my high school friends expressed sympathy and said that she remembered that my mother was always kind. This seems worth noting because Dawn hadn't seen my mother in at least 40 years.

We took the cats to the vet for their annual checkup today: the vet did a basic physical exam, and drew blood for tests. They have improved the feline rabies vaccine, and it's now good for three years. So, having had the vaccine a bit over a year ago, they're fine for a while. Kaja's teeth continue to be a problem, and they're probably going to have to extract at least three. Kaja's bloodwork is necessary before they do that, and Molly's is just in case, because we're pay for annual memberships for both cats, which cover routine bloodwork, among other things.

I'm seeing my neurologist on Monday, for what I hope will be a routine appointment, and will be having a colonoscopy on Thursday. That will involve a couple of days of a low-fiber diet, followed by one day of clear liquids only, and then a strong laxative that they call the colonoscopy prep. They gave me an afternoon appointment, which I think means I can get a few hours sleep Wednesday night, then get up in the middle of the night to drink that stuff, rather than expecting to be up all night.

This feels like a busy week, in part because we had to reschedule the trip to the vet. (We've only been home from London for a week.) I'm sleeping surprisingly well, going to bed, turning the light out almost immediately and falling asleep quickly, rather than reading for at least half an hour and then lying awake a while after I turn the light out.

Apparently the reason I hadn't heard from either her or my brother yesterday is that she fainted, went to the emergency room instead of her doctor's office, and then waited hours to be seen.

A CT scan found lung cancer, in both lungs. They're still waiting to talk to an oncologist, and my brother is on his way to London now. The three of us will be going to London in a few days, possibly as soon as Thursday, or maybe Saturday. My brother has a long layover in Charlotte, and is going to spend part of it looking at airline tickets for us, possibly using my mother's frequent flier miles for one or more tickets.

I spent some time this morning looking up travel-related things that we may not need, but will do no harm, and wondering about Oyster cards is better than doomscrolling. I also called my doctor's office and asked whether there were limits on where the patient can be for a telemedicine appointment. The receptionist said she thought that technically, I have to be in Massachusetts; we agreed that I can call back if I need to postpone that.

My gut was bothering me earlier, which is almost certainly from anxiety, but still has me a little nervous about this trip. (It's been just over a week since I saw the GI doctor.)

The advice the GI doctor gave me on Monday seems to have done the job: my gut has been behaving since the visit, which is five days so far:

The doctor told me was to take the imodium (anti-diarrheal) twice a day whether or not I have symptoms, and start taking psyllium (metamucil). I was surprised, because psyllium is generally referred to a laxative; I suspect that's why Carmen didn't think of it. Assuming I'm still fine on Monday, I'll be sending her a MyChart message

I've taken one/day for five days, which seems to be enough. The package instructions are not to take it within two hours before or after other medication, because it can interfere with absorbtion. I'm already taking other medication on something resembling a schedule, which means this one has to be at or a little after 6 o'clock, unless I want to fiddle with the timing on something else. The schedule includes "right after I wake up" and "after breakfast." )

We went downtown for the Boston part of today's nationwide "hands off" protests. We arrived as people were walking from the Common toward Government Center, so we joined them there.

There were a lot of different signs, most of which looked home-made, a mix of general things like "Nobody elected Elon" and signs talking about a specific thing. Adrian made three signs: a simple "NO," "Peace, Love Freedom and a Hard-boiled egg"and one that said "Which Side Are They On?" [2] Some people were carrying or waving flags, mostly Pride (I saw both rainbow flags and Progress Pride flags) and American and Ukrainian flags.

There was enough organizing energy to do things like arrange for speakers and to use the big plaza near City Hall, and a somewhat chaotic mixture of chants and singing as we marched, including one verse of "We Shall Overcome." We left fairly early, while Sen. Markey was speaking; we were too far back to make out a lot of what he was saying."

I started running low on energy while Markey was speaking, so we left while other people were still arriving, but we were there long enough to be seen and help make the crowd larger. I timed it right, meaning I didn't run out of energy before we got home.

Yesterday I was guessing I wouldn't be able to go, because of either joint or GI issues, but I took pills before we left and crossed my fingers, and it worked.

I did most of this masked. I took my mask off when we got out of the T at Park Street, then put it back on because it ws dense crowd and not much breeze. I was pleasantly surprised to see some other people masking at the rally.

When I said I was tired of almost all my outings being medical, I was thinking about museums or seeing friends, but this is what needs doing.

[1] "Reasonably priced love" wouldn't work in this context.
[2] The union song that's based on asks "Which Side Are You On?"

My gut is still bothering me on and off, so I called Carmen's office and asked them to give her a message. The receptionist called back, and I have an appointment to see her Thursday morning. In person: the receptionist offered telemedicine, but it sounded as though Carmen thought this appointment might work better in person. It occurred to me after hanging up that she may want more blood tests, and that will be a lot easier as well as quicker with a phlebotomist on site than if I had to try to get an appointment at Quest. (If necessary, I will call the office Thursday morning and ask to switch it to telemedicine.)

One of the things I want to ask about on Thursday is whether it makes sense to travel in a couple of weeks.

Based on my notes from a couple of months ago, I think this will produce a prescription for a different antibiotic, a referral to the infectious disease specialist, or both. Also, based on those notes, I probably should have called Carmen sooner, but it had seemed as though things were improving (based on tracking which days I took Imodium.)

I'm still having intermittent diarrhea weeks after finishing the Dificid (antibiotic), so I just called and rescheduled my MRI from tomorrow to March 1st.

The actual rescheduling is no big deal, this is an MRI because I haven't had one in over a year, rather than because of new or worsened MS symptoms. But I'm tired of postponing my life, a week or two at a time.

Also, I just sent my psychiatrist a MyChart message about needing a mirtazapine refill early.