redbird | Recent Entries

Hi. This is an online substitute for a paper journal, as well as a place to talk to people, so a lot of what's here is quotidian stuff about my life and place. ~~These days, that's more exploring the Seattle area than what's in bloom right now in my corner of the world.~~ As of March 2016, "place" is the Boston area: we moved to Arlington, Mass., in March 2016, then Somerville a year and a half later. I'm now living in Boston with @cattitude and @adrian_turtle, still figuring out my way around Brighton and other parts of Boston, and how long it actually takes to get to my various medical and other appointments on the other side of the Charles. Some of the basics about me are in my userinfo; the userpic with this sticky post is a photo of me, taken in 2007, in case you're wondering whether I'm the redbird you know from elsewhere.

Long ago when the net was flat, I spent a bunch of time on Usenet, mostly rassef and alt.polyamory; I did some of my growing up in science fiction fandom, which in my case meant writing in/for a lot of apas. If you don't know why I subscribed to your journal, we probably have friends in common, and either one of them said "this person is cool" or you posted interesting comments, and I looked at your journal and found it interesting.

Anyone is welcome to read and comment on my journal (though I screen comments on some posts). I do post some things locked and/or filtered. I am more likely to give access to people I know, either previously (online or off) or from interactions here. If we know each other but I might not recognize your username, please leave a note here so I can make the connection.

If we don't already know each other, welcome, and please introduce yourself. I'm screening all comments to this post, so you can tell me "Hi, it's $old_friend" without other people seeing the connection between your username here and other names or handles you use. Or comment on other posts, and I'll get some feeling for what you're like.

There are a half-dozen access-locked posts in here, none recent, with nude photos of me (all tagged "nudes"). I grant access to most people who ask (and many who don't), and those aren't the posts I consider private.

I generally use a cut tag for details of exercise or (rarer) body size/shape posts, and I tend to avoid other people's discussion of weight and dieting. By request, I'll be cut-tagging discussions of covid masks. If there are other things you would like similar warnings about, let me know. (I am assuming the current level of cut-tagging on exercise is okay for everyone reading this journal; if not, let me know and I'll see what I can do to address that.) I also use cut tags for things that even I don't find very interesting, but may need to look up later: Dreamwidth as external memory.

I'm (still) posting about politics. I'm not cut-tagging those posts, but I am going to try to label the entries that are entirely or mostly about politics, rather than drop a paragraph about calling my senators in between discussions of out-of-town visitors and cucumbers, in case your self-care means you need to rake a break from reading about politics.

I'm also still posting about the coronavirus pandemic, how I'm dealing with the situation, etc. Most of those posts are tagged with "COVID-19," "life during covid-19," or "the new normal" (or "the new normal?") and some are also tagged "coronavirus"

[last updated July 17, 2024]

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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.

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The clowns running the FDA have proposed restricting access to covid vaccines, to people over 65 or who have certain medical conditions. There's a public docket for comments on the proposal.

Your Local Epidemiologist has a good post about the proposal, including that the people suggesting this know that nobody is going to do the placebo-controlled tests of new boosters they want to require.

Possible talking points include:

Families and caregivers wouldn't be eligible for the vaccine, even if they share a household, unlike the current UK recommendations.

Doctors, dentists, and other medical staff wouldn't be eligible either.

My own comment included that the reason I'd still be eligible for the vaccine is a lung problem caused by covid.

(cross-posting from

thisfinecrew)

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I just bought a membership in this year's Wiscon, which is entirely online, so I don't have to worry about energy levels, or covid risk, and all I'm paying for is the con, not airline tickets and a hotel room and all.

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wiscon

I went for a walk this afternoon with Cattitude and Adrian: downhill to Beacon Street, then inbound as far as the Summit Avenue T stop. Not only was it useful exercise, I got to smell one of my favorite flowers, rugosa roses. It may have been too long a walk, because my joints were feeling the strain before I turned back and took the trolley partway home, but if I'd turned back any sooner I'd have missed the roses. While I took the T home, Cattitude and Adrian continued to Coolidge Corner, to shop for groceries and then get bagels. (Most of the time, the two of them can walk further than I can.)

I had to walk a few blocks uphill from the T to get home, but I allowed for that when I decided how far to walk. I came home, took my shoes off, and sat a while before I put on the shoes that I'm still breaking in. I will probably break them in a little more before I wear them outside.

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I went to the New Balance factory store today* and, with the help of two salespeople, found a pair of shoes that I think fits. I bought it, then treated myself to a hot fudge sundae before coming home.

By the time I got home my feet hurt, which is from either trying on shoes that didn't fit, or the amount of walking I did in my old shoes. I will wear these around the house for a few days to break them in and confirm that they fit.

If they fit, I'm going to go back and buy another pair in a different color; if not, I'll return them, regretfully. I also want to see about sandals, and have a few stores in mind, but shoe shopping is so often frustrating that I wasn't going to try a second shoe store today.

*meaning Friday, which is yesterday by the computer clock.

I had a CT scan of my lungs this morning, then saw the pulmonologist. The CT scan looks OK, considering: "Again seen is diffuse bronchiectasis with tree-in-bud opacities seen in the right upper lobe, right middle lobe and lingula. The areas in the right upper lobe may have improved in the interval."

The low-tech exam was also reassuring: the doctor used a stethoscope to listen to my chest, and had me cough while listening. She heard no wheezing (or other problems), which is good. So, she told me to keep using the flutter valve twice a day, and come back in six months.

And, some non-medical notes:

I discovered that it's possible to accidentally cancel a Lyft ride by putting your phone in your pocket after the driver has picked you up. The driver suggested I text Lyft to tell them I hadn't meant to cancel, but I couldn't figure out how to do that. After a minute or two of frustration, I asked the driver if he would take cash instead, and he said yes. So I handed him $25, and repeated the destination address so he could enter it in his GPS. I try to carry some cash on general principles, but this isn't something I was expecting to need, or be able, to pay cash for.

Mount Auburn was also having some trouble with their medical information system: the doctor could see the CT scan, but only on the machine in her office, not the one in the exam room. Fortunately, I didn't need to see the images. Given their computer problems, I was particularly pleased to have a list of my current medications on my phone, to show the doctor's assistant. I don't yet have my follow-up appointment, but that's not because of today's computer problems, but that they aren't set up to book follow-up appointments that far in advance.

I took transit home, which is cheap and makes sense to me, from many years of practice. I stopped at Flour to get something to eat, 7-11 to use their no-fee ATM to withdraw some more cash, and CVS to pick up a prescription, and was home in time for lunch. It was effectively two stops rather than three, because the 7-11 and drugstore are both near the bus stop where I was changing from the bus to the trolley.

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I had a colonoscopy this afternoon. The preparation was not fun, though not as bad as I'd feared; the main problem is that I am short on sleep. The worst part of the colonoscopy was the nurse placing an IV, because I was dehydrated (as expected in this context), and what would otherwise have been the best location is bruised from having blood drawn Monday.

I already have results back via MyChart, and since the colonoscopy was done by GI doctor who recommended I get one, I know she has the information. It looks basically OK--no evidence of inflammation and no polyps--but they did detect internal hemorrhoids. She "randomly" biopsied eight locations, so they can look for microscopic colitis, and I will probably have those results in about two weeks. The recommendation is to wait for the pathology report and then see her again.

ETA: Also, I had to take my N95 off for the colonoscopy, because it was done under sedation. The sedative was given via IV, but they had a tube feeding oxygen into my nostrils, and the anesthesiologist needs to be able to see that the patient is continuing to breathe properly. I gave them the mask when I lay down, and they gave it back to me (in a zip-lock bag) when I woke up.

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I had a routine follow-up visit with my neurologist today, and it was in fact routine. The closest it got to surprising is that the doctor had a little trouble seeing my old MRIs, taken at Mount Auburn. But once I told her that they were from Mt. Auburn, and her office had told me they'd take care of having them sent, she knew where to look.

Last month's MRI found no evidence of an active MS lesion, or anything else bad, and it's basically the same as the one a year earlier. They drew some bloo for tests including B cell levels, immunoglobins, ferritin, and the usual CBC and differential. Follow-up appointment in six months, when Dr. Sloane wants to discuss lowering the gabapentin dose; we're saving that question for (when I exoect to have less going on than I do right now.

My appointment was mostly with a Dr. Azuma, who said she's a fellow at the hospital, rather than Dr. Sloane. At the end of the visit I asked if she was going to be staying at the clinic after she finishes her training, and she said yes; I asked because I liked her. I noticed that she had a separate badge saying "my pronouns are she/her/hers" attached to her hospital nametag; given *gestures at world*, it seemed like a good sign that the hospital is OK with that.

Next up, colonoscopy on Thursday. I called to ask them a few questions about things like what I can eat as part of the low-fiber diet today and tomorrow, and one about the paperwork, and got voicemail, so in the meantime I am erring on the side of caution. However, I wound up looking at MyChart, and saw that it gives the date for the colonoscopy, but not the time, and the time I remembered didn't match what I had in Google calendar. I did find that date in an email they sent me two weeks ago, which is reassuring, but definitely something I want to ask about ASAP, because the prep instructions include something to be done six hours before the procedure.

Addendum: I got through to the GI doctor's office, and got answers to my questions about the low-fiber diet and the paperwork--but it turns out that the answer to when I should stop the Imodium is, last Thursday. So I'm waiting for a call back to find out whether I need to reschedule the procedure, but will be following the low-fiber diet tonight and tomorrow morning, and not taking either Imodium or the fiber supplement until I hear back from the doctor's office.

I'm seeing the lung doctor a week after that, also a routine follow-up.

5/6: Just heard back from the GI doctor's office, who told me "I just spoke to Dr. Morgan, and she said it's fine that you took the imodium." So, continue the low-fat diet today (I have a bowl of plain yogurt here), and liquid diet tomorrow, as planned.

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medical

I took the bus to Cambridge today to visit some lilacs near Harvard Square. These lilacs are in the front yards of several houses near Mount Auburn Street (on Ash Street and Story Road), not the impressive collection at the Arnold Arboretum, but they're much closer to transit. There was enough rain yesterday and today to wash away some of the pleasant lilac scent, but there was enough to enjoy when I leaned over to smell the flowers. Most of the flowers on those lilac bushes were already open this afternoon, and they're forecasting more rain for each of the next several days, so this may have been my best chance (especially given my upcoming medical appointments), though I may look for more lilacs near my apartment tomorrow or Tuesday.

I stopped on my way home at Lizzy's to replenish my supply of ice cream. I wasn't thinking about ice cream until Adrian reminded me this morning to take the insulated bag with me, so I'm glad she mentioned it. (Ice cream without nuts, seeds, or pieces of fruit is on the list of things I can have as part of the pre-colonoscopy low-fiber diet tomorrow and Tuesday.) or I might have bought a pint of strawberry or ginger.)

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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.

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I had my quarterly appointment with Carmen so she can continue to prescribe the Ritalin. I spent part of the time talking about Mom's death, including how the trip had affected me physically, and specifically that my joints hurt much less than I expected given the amount of walking.

A bit later, the three of us went for a walk, and my knees started to hurt a little almost immediately, despite the precautionary naproxen. At that point, I realized that I walked a lot almost every day of the trip, but almost all of it was basically flat, long hospital and airport corridors.

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We went to Havurat Shalom this evening so I could say kaddish. It was warm and sunny, so we could have the service in the back yard, and I didn't need a mask.

A couple of my old friends showed up, including Elly Freeman, who lived in the apartment next door to ours in New York for a while, and Elizabeth Stone and her twin brother Larry, who I went to college with. There were also several havniks, including two or three I don't know, who showed up because I needed a minyan.

Ruth, who was leading the service, kindly slowed down enough that I could say kaddish, reading the transliterated Aramaic from the prayerbook. Last Thursday, at my mother's flat, I couldn't get out even a syllable of the Aramaic, and I kept falling behind the rabbi.

It was comforting in ways that the other wasn't. I'm not sure how much of that was that I knew more of the people, and how much was because they were there for me to say kaddish: my mother's rabbi was there so my brother could say kaddish, and didn't think it was important for me to.

Adrian and I talked about my mother--Adrian first, because when asked to tell people about her, I drew a blank, because there's so much, and I didn't know where to start.

After the service, my friends stayed to talk for a bit, about my mother and also about the ways grief had felt for them. Some of them would have stayed longer if we'd wanted, but I was starting to feel chilly and had a vague awareness that we'd want dinner at some point.

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These are focused on my mother's work as a Holocaust educator, and her early life in Germany and France before she came to the United States:

Holocaust Educational Trust: Eve Kugler BEM 1931 – 2025

Jewish News: "She lit up every room"

OPINION: How Eve Kugler changed the world

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mom,
obituary links

I will be sitting shiva Monday at Havurat Shalom in Somerville (113 College Avenue, a few blocks from Davis Square) on Monday, April 28, starting at 6:00 p.m. Weather allowing, we'll be outdoors in the yard most of the time, so I don't have to worry about masking/covid exposure. Thursday night, sitting shiva at my mother's flat in London, I started sobbing enough that I had to take my mask off in order to breathe.

Please pass the word to anyone who might want to know, who might not see it here.

Since a couple of people asked about this: the plan is to start the service when we get a minyan, and do either the afternoon or the evening service, as appropriate.

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[Expect multiple posts about this over the next days and weeks, but I'm going to put more than one thing in a post, rather than make a couple of dozen short posts.]

My mother's cause of death was metastatic lung cancer; she'd been short of breath for a while but kept insisting nothing was really wrong. Then she fainted on her way to see her doctor on April 14, and her carer and one of her good friends decided to take her to the emergency room instead.

I wish I'd traveled sooner, but last Wednesday Mom told me that I shouldn't come right away, but wait until she was home from the hospital to visit because hospitals are boring. At that point they knew it was cancer, but were talking in terms of weeks or months, and what treatments to consider. Saturday morning (4/19) my brother said we should get there as soon as possible, and we were on a red-eye flight to London that evening. By the time I got there, my mother was a lot weaker, and not up for much in the way of conversation, but she was happy to see me, Adrian, and Cattitude. On the 21st the palliative care team said we should think about whether to send her home or to hospice. Mom wanted to go home, but said that she wanted whichever would get her out of the hospital sooner. Tuesday they told us "24 hours" and that she was too sick to be taken home or to a hospice facility. She died at 2:30 Wednesday morning, with my brother and his partner Linza sitting with her.

Sitting shiva is supposed to be people coming to comfort the mourners. That's part of what happened last night, and it was valuable, but Mom's stepson Ralph asked if Mark or I would be willing to sit on Sunday as well, for the same of my mother's friends from March of the Living (a Holocaust memorial that Mom had been participating in since 2012) could pay a call, and I didn't feel up to that. I wanted to be home, in my own bed, and have my friends comfort me, not listen to more people I've never met tell me how wonderful my mother was. The group had a memorial service for her Wednesday night in Cracow, which was before the funeral.

My mother referred to Holocaust education as her "third career"; she volunteered once to talk about her and her family's experience, and the next time they needed a speaker they asked her again, and she saw work that needed doing and put a lot of time and attention into it. [Put in a link to one of the online obituaries?]

I'm leaning on Adrian for guidance on how some of this can/should work, given that this needs to work for me, her, and Cattitude. Formally, my brother and I are the mourners, but Cattitude and Adrian both love and miss my mother, and she loved them. (Apparently several people who heard her talk about the three of us said things like "Eve was very...open-minded," which is true but misses that my mother loved them both.)

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grief,
mom

My mother died, very unexpectedly, Tuesday morning.

We got to London in time to see her for a couple of days, but by the time she got there she was too weak, and in too much pain, for much conversation. We kept telling her that we loved her, and the last thing my mother said to me was "I love you."

The funeral was yesterday, in London. My brother and I sat shiva at Mom's flat last night, and then Cattitude, Adrian and I fled for home early this morning. At the funeral, and then last night, people kept telling us how wonderful and energetic and important she was.

More later, but I wanted to post something now.

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Things were looking significantly worse this morning, so the three of us are going to London tonight on a red-eye.

I may not be reading much, or I may be spamming everyone's reading pages.

I just got off the phone with my brother, and don't need to dash off to London. This is the current situation:

There are treatment options for the cancer, but they know it's not curable: the goal is to get my mother more time, and make her more comfortable for however long that is. Mom definitely wants to fight this.

The immediate problem is that there's fluid around my mother's lungs. The pulmonologist described the problem, and said there are two possibilities for dealing with that, and he will come back tomorrow and ask Mom for a decision. Given the hospital schedule and what the choices are, if the first doesn't work she can have them do the other.

The pulmonologist doesn't think the oncologist will want to start treatment until after the fluid is drained, but the cardiologist will also be back tomorrow.

Given all this, I'm not planning to travel before Saturday [three days from now], and Sunday or Monday might be better in terms of both having my and my brother's visits overlap, and giving Mom company for longer. Mark will call me again once they talk to the specialists, to fill me in and maybe discuss travel plans based on what they learn. and decide, tomorrow. In the short term, knowing we're not traveling immediately is helping the three of ust deal with logistics like what to make for dinner, and Adrian picking up a prescription. It also means Cattitude can try to decompress a little, and wait until tomorrow to do laundry.

The other open question is how long I will want to stay in London. One possibility is that the three of us are all there there for a few days, after which they fly back to Boston and I stay longer.

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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.)

Current Mood: worried

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My feet hurt because I decided to go for a walk with Adrian and Cattitude, even though one hip and my feet were hurting before we started, and even with an NSAID. I went anyway because I didn't think walking would make things much worse, and tomorrow's forecast is less appealing. It was sunny and 69F/20C outside, with a bright blue sky and delightful spring flowers, including two kinds of maple flowers, red and the underappreciated light green of Norway maple flowers.

We went to the supermarket, and bought ingredients for Passover-suitable lunches that we can make ahead of time. This morning/early afternoon was difficult because I slept later than usual, and Adrian and Cattitude got up later than that, and we didn't have plans for lunch, or useful leftovers.

That was on top of worrying about both my mother and the world situation. I was expecting to hear from my mother or brother by this afternoon, and haven't. I realize that bad news would be, and be treated as, more urgent than good or ambiguous, but I still worry. The time zone difference doesn't help any (it's five hours later in London than here).

Current Mood: worried

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Praise then darkness, and creation unfinished

Don't mourn, organize

Sticky: Welcome

talked to GI doctor: we have a plan

proposed restrictions on covid vaccines

Wiscon

walk

shoes

CT scan looks fine

colonoscopy

Medical: saw the neurologist

lilacs

three or four things make a post

talked to Carmen

shiva

Mom: online obituaries and articles about her work

sitting shiva for my mother, Monday

More about my mother

Eve Kugler, 1931-2025

Mom

Mom health update

bad health news about my mother

It's a nice spring day, and my feet hurt

About Me

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