hip_hooray | Member Posts

I am counting today as day 1 in this adventure across the country...

Oh, wait... it's now Day 2. Thursday (our arrival day) turned into a hot mess for so many reasons but it all got managed and then Friday we arrived at Casa

sine_nomine West. Got so many boxes unpacked, tried on compression garment (which miraculously fit!) and met the MLD specialist (she came to my house! on a SATURDAY!), stayed up late (to try and get on CA time; it didn't work as well as I wanted). We are building Team

sine_nomine, to be sure. Caregivers seem lovely, though I hate the idea of 24/7 room mates. They are going to be necessary.

Today was packing up still more books that the owners had on their shelves (I sent a bunch of books, some of which aren't here yet... but, if I'm going to be here for nearly six months I want the place to feel like mine, not theirs). Have a picture of Sweetheart on one side of a pothos and one of my pieces of Native American pottery (a bear) on the other. Desk is looking overrun. I have to figure out how to get it all organized. And we packed up nearly all the kitchen.... because, again, my house - and I have to have some place to store my food and so on. OMG SO many appliances and other things (I did keep the professional-level juicer here; I'm in SoCal. There will be juice!) There's a reason I rented a 5x10 storage unit for the duration! Sent all the kitchen stuff and books and more to the storage unit. Sent back several Amazon things for credit. Busy day. OH and the helper my On-the-Ground assistant brought LOVES arranging flowers - so I've hired her to arrange flowers for me each week, after going to a thrift store to pick up interesting vases and such. She's away this weekend. I'll have to order something for post-first-procedure recovery.

Apparently, I'm already a bit of a legend at the doctor's practice? R, the premier caregiver said I was - and with a tone that says it's a good thing and not that I'm anticipated to be a PITA. I'm boggled because I don't have any idea why that is... but it's clear that I've really got the A Team. Too, I'm sure the decision to move here for six months to ensure I get the most complete recovery and follow-up that I can have probably got them to realize how seriously I'm taking this. All of which is true - but also I don't have the mobility or the patience to return home between procedures. Staying here - where folks know what they're doing, know how the doctor works, and so on - just makes so much more sense.

And now I should think about heading to bed.

redbird

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.

sine_nomine

Well, today has been interesting. Managed to pack most of what I wanted to pack, arrived at airport on time, had not booked car for airport pickup across the country. Figured no biggie we can get wheelchair accessible car service or taxi. Except the airport, in its wisdom, moved all that to Terminal 1. Um. I have questions.

But it gets better (and I am making a crazy long story short). The electrician who was supposed to get to my rented condo today couldn't get there. And we need him to install a GFCI for the toilet seat lift. Technically, he was supposed to be there yesterday, but the property manager only sent a handyman. So no GFCI means no toilet seat lift. No toilet seat lift means I can't use the toilet. It's too low. So I reached out to my realtor, she suggested she find an accessible hotel room near the airport, and started making calls. I realized I could do that, too, AND I am an Honors Gold so on to the Hilton app I went.

Found an accessible double/double so I would have shared room with my aide. Not ideal, but doable. Got to hotel via angst, and (again eliding stacks of details) end up with two rooms, one comped AND the food and beverage credit for each room. Because in the hunt for two rooms near each other (or a SUITE! They wanted to give me a suite! But it sounded like non-accessible) they sold my reservation out from under me. So instead of a double (much easier to get into) I am in a King. BUT we each have our own room which is way more preferable. And the bed is actually low enough that I think I can get in it on my own, and yet high enough that I can stand up.

So I am about to go to bed (because my body thinks that it's 2:41AM; thank everything holy that I slept on the plane!), and serious food tomorrow. Because last food I ate was dubious salmon grain bowl on the plane (it's served COLD! With no warning. Unsauced lentils and quinoa do NOT work cold!). No energy for getting food at the hotel. So we eat, check out, and go to condo. Where it will be like Christmas with all the stuff I ordered. And I hope we can explore the neighborhood, too.

Okay must make it warmer in here and go to bed.

redbird

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.

redbird

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

redbird

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

redbird

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." )

redbird

My brother and I are both worried about our mother: she's a lot weaker than she was a few months ago, and apparently hasn't been eating much. So far, the doctors she's seen haven't found anything specific, and/but she has a follow-up appointment on Monday, by which time the doctor will have more blood test results to help him figure things out.

I'm not jumping on a plane tonight, but I will likely be going to London soon, with Cattitude and Adrian. Even if she's feeling a lot better by Tuesday, I haven't seen her in a while, and want to. Mark is probably flying to London in a few days, in any case, even though she visited him for Mardi Gras.

I've done some planning and preparation: we all three have valid passports, and I now a UK Electronic Travel Authorization, which they started requiring a few weeks ago. It took me about 20 minutes to apply, much of that spent repeatedly trying to get their iPhone app to read the RFID chip in my passport, and about two minutes for them to approve it. So I can visit the UK anytime in the next two years, as frequently as I like.

I emailed our catsitter yesterday, and said that I might need them soon but I didn't know how soon, and she assured me someone would be available. (The person I talked to has a small team of cat-sitters.)

Fortunately, the very simple instructions the GI specialist gave me on Monday seem to have resolved my problem (I've been fine since Monday afternoon). Thank goodness for that last-minute appointment.

sine_nomine

PSA: If anyone finds my head, or my mind, I would be so grateful for the return of either and/or both.

Thank you so much.

Current Mood: frantic

redbird

A couple of notes on Consider the Fork, by Bee Wilson, which I read a couple of weeks ago. This started as a belated reply to

anne's comment, but I want to post it where other people might see it. (Apologies for any fuzziness, it's past my bedtime.)

I liked it. There's some overlap with the book I read a while ago about the history of refrigeration, but mostly the emphasis here is different. Despite the title, the author starts by talking about wooden spoons, and that they come in a wide variety of shapes and sizes. Having started there, the book ends by discussing some kitchen tools that are younger than most people realize, such as good vegetable peelers.

As

acelightning2 alluded to, the Chinese approach, where food is either cut up into small pieces before cooking, or cooked and then cut up in the kitchen, means diners aren't holding anything pointier than a pair of chopsticks.

Something that stuck in my mind: one 19th-century home ice cream maker made ice cream in only a few minutes, faster than any of the ice cream makers you can buy today. A few of these machines still exist, but their owners aren't using them: it turns out that the zinc-lined bowl leaches toxic zinc into the ice cream.

redbird

I have done several useful things this afternoon, including two of the three things from today's list. Unfortunately, the one remaining is the one I'm least looking forward to.

I don't usually have a to-do list anymore, but enough things had piled up that I grabbed some scrap paper and wrote a reminder that I would definitely see when I sat down at my desk this morning.

The two list items were to make appointments for the cats to have their annual veterinary exams, and to get an itemized bill for my last couple of dental appointments. The appointments are made, using the veterinarian's app; it's part of a small chain, so the first question was which office I wanted appointments at.

I called the dentist's office this afternoon and explained what I wanted (itemized bills for the last couple of visits, for insurance purposes), and the receptionist said they'd send me the bills. I actually had an itemized bill for one of these, but didn't keep it, because I didn't expect to need it. But Aetna has sent me a patient reimbursement form, and it asks for the date of the visit, what they did, and the amount, which has to match the itemized bill. So, I need an itemized bill, not just "on X date they cleaned my teeth and charged me Y dollars."

After talking to the vet's office, I paused and did some useful things that are routine enough they weren't on the list: taking out trash and recycling, and a little PT.

The remaining item is calling Aetna yo ask about colonoscopy coverage, since Mt. Auburn doesn't appear to be in-network for this. Whether or not it's in-network, I am hoping for some idea of how much I'll be charged. I don't expect to like the answer, but that's partly because the answer may be "we don't know," and is more likely to be that they pay X percent of total, which the hospital won't tell me in advance.

Current Mood: productive

elisem

Some news and commentary outlet just published a story about how eggs were so expensive right now that Americans were turning from dyeing Easter eggs to dyeing marshmallows or other substitutes. OK, fine, whatever, I thought. And then I got to this sentence:

“This is such a great idea!” one person commented. “No one eats the colored eggs, so these will actually be eaten!”

What the whatting WHAT?

So I have to ask people. If you grew up dyeing Easter eggs, did you eat the dyed eggs?

Poll #32966 did you eat your dyed easter eggs?

Open to: Registered Users, detailed results viewable to: All, participants: 49

View Respondents

Did you eat the dyed Easter eggs?

View Answers

Of course I ate the dyed Easter eggs!
39 (79.6%)

Eat the dyed Easter eggs? No!
2 (4.1%)

We didn't do Easter eggs.
4 (8.2%)

Clicky!
4 (8.2%)

redbird

For people living in the United States: Bona Fide Masks has sent out email saying they will not be raising the prices of the Powecom KN95 masks they import from China, and gave a discount code, SPRING25, good for 25% off through April 20th.

Separately, I just ordered a bunch of tea, because I expect the price to go up, and realized after placing the order that while we think of the Formosa oolong as Chinese tea (rather than Indian or Japanese), Formosa is another name for Taiwan, so those ridiculously high tariffs may not apply.

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Hip Hooray

Member Posts

LA, Day 1

Mom

The best laid plans

Mom health update

bad health news about my mother

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

some good (health) news

worrying about my mother

Ahem.

Consider the Fork

a productive afternoon

Dyeing Easter... Marshmallows?

Mask and tea prices

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March 2013

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