Thursday, May 31, 2018

Resistance, FaceTime, 1000 mile month, cupping.

I feel a gentle resistance to doing anything these days.  Do I want to go to work? No.  Do I want to make dinner? No.  Do I want to snuggle with my children? No.  Do I want to go get ice cream? No.  Do I want to answer email? No. But do I do these things?  Yes!  I do all of them.  Well except for the ice cream because, really, I'm not exercising enough to get ice cream everyday. I'm not sure why I feel this way - maybe it's a whisper of my old old depressive tendencies when I wanted (and did) stay in bed all day unable to face the world (this happened even before Edda's Rett diagnosis, I think the strongest and most protracted occurrence of this happened in my mid 20s).  Now that feeling is so reduced to the slightest of tugs - I can usually redirect myself into doing what I'm suppose to be doing, though sometimes I do still tuck in under the covers. 

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Alice is had her scoliosis surgery at JH on Tuesday, so we are trying to entertain Soojung during her long hours at the hospital.  Who's idea was it to Facetime?  Or Facebook messenger video? 

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Jeremy spent an unbelievable 63 hours on his bike in May.  1000 miles.  Somehow I had wrapped my head around the 1000 miles, but the time!  So much time!  This amount of time seems to indicate that he spent no time at home this month with me, but I didn't feel like he was away more than usual. 

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Lyme disease?  No.  It's cupping.  I can't believe I had cupping done today.  I found an acupuncturist who takes my insurance and is close to the house (my old acupuncturist is unreliable only in the sense that he is a man of leisure and travels a lot).  I'm trying to fix my injured hamstring (which has been slightly injured for months now), but I've resisted (surprised?  I'm not) going to anyone - no physical therapy, no acupuncture (which Paul always suggests), no nothing.  I like doing nothing. But I also like to run, so I reluctantly set up this appointment.  The acupuncture included a cupping session & a 15 minute massage.  I asked - so what's the deal with cupping?  The clinician replied that it was to remove toxins from the body.  I guess that was the answer that I was expecting.  My mysterious toxins.  Also the masseuse (after pulling on my ears and asking if it hurt...I said, well you are pulling on my ear, so that isn't fantastic) was telling me that my liver was full of toxins and that I needed them removed by having a longer massage session for an extra fee, I politely declined.  I had to go back to work and anyways, my liver is suppose to be full of toxins that it's removing from my body.  It's fine.  I'm ready to be surprised tomorrow, we'll take the leg on a test run.  Maybe. 

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Tuesday, May 29, 2018

Ramen, surgeon, transition, GABA rice.

Memorial day, Jeremy and I went out on a mid-day date where we saw RBG which was fine.  It was interesting and generally cheerful & funny, but I was in a bad mood all day, so I think that dragged my reaction of the movie down.  We sat very close to the front of the theatre and so it took up our whole field of view and we had to watch with our necks slightly crooked.  I've for sure turned into an old person because now I always bring foam earplugs to any movie and wear them to protect my ears from the loudness of the sound.  I usually reserve them for only action movies, but I guess now I use them for regular just speaking movies.  We went to H-mart on the way home to make some ramen (inspired by the YouTuber Vlog after College) which we all enjoyed.

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As the short work week started, we went to see Edda's surgeon first thing this morning.  We did a set of X-rays and then a quick appointment and everything looks great!  Everything has healed well and I said - textbook?  and he said - yes!  And then he knocked on wood.  Now he considers it pretty stable and we can come back yearly...

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Then we went to Edda's transitional meeting to high school at her current middle school.  Her whole middle school team told us how well she's been doing and how they are so sad that she's leaving them.  I wish I had asked for a group selfie, but I did not.  It's been a nice three years, I do love her teacher and he's been her teacher for the whole time we've been in middle school.  I enjoy that continuity.  We met the coordinator for the high school team and she told us what to expect from a regular school day for Edda.  I asked if it was OK to go visit the high school now to meet the teachers, but it turns out they are expanding the program from 2 classrooms to 3 classrooms and one of the teachers is retiring and so they've hired two new teachers and they are not there yet, they are teaching at other schools right now.  Edda will go to my old high school, Wootton, and she'll go to a program where she's out in the community most days and they are going to try to teach her to do a job.  I know, it's weird.  I have no intention of Edda having a job, I want her to have a life of leisure where she will watch movies, drink beer through a straw and take naps next to people who love her, but whatever, they are going to try to get her become task oriented... I dunno.  I'm more worried about her graduation ceremony which happens in the middle of the day in a few weeks and I'm trying to figure out how to make it happy & not too sad like the class photos.  I think I can ask for her to go first or last in the whole line of getting diplomas.  Maybe I can bring Vince to walk her across the stage? With a whole bunch of balloons?  Maybe I could walk her out on stage.  But if I walk her, there won't be anyone in the audience to cheer for her.  Jeremy's out of town and I'm afraid I might bail and not go.  Isn't that terrible?  I can be terrible sometimes. You need to understand that I know none of the kids or the parents at her middle school.   Like no one.   This is not my neighborhood school, so these are not my neighbors.  She's the only 8th grader in her teacher's class, she's going to be the only special needs kid walking or rolling across the stage.  It could be really kind of traumatic for me.  Ack, you know, usually these things that I think will be traumatic end up being OK.  I'll figure it out.

Jeremy made GABA rice tonight in the super smart rice cooker.  My bowels feel all healthy and extra regulated.

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Monday, May 28, 2018

Race, Olympic kayaker, Wallet.

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One of my favorite parts of learning something new is all the extra vocabulary that goes along with it.  I've given up learning a 2nd language - I can tell my memory even for my first language is slipping, slipping - but I'm mostly ok with learning new English words.  In quilting, there are mitered corners, chambray, bias, English paper piecing.  In orienteering, there are reentrants, spurs, attack-points, handrails.  Jeremy & Edda and I had gone to packet pickup for this race and I was reading through the packet - telling Jeremy that 1. this was not a race and 2. he needed to stop at every stop sign and 3. that the sag wagon could pick him up if he faltered.  (It was not really a race because they've had serious accidents in the past and people got angry about fast bikers zooming through not-closed off roads.  And yet.  There are posted, timed, chipped results.).  I told him that Edda and I were his own personal sag wagon and what did SAG stand for exactly?  He didn't know - I looked around.  It stands for support and gear.  I said that I had no gear and that maybe we were just his cheering squad and that I thought in triathlon they would call me & Edda sherpas.  Then he said in biking those people were called: soigneurs.  Ah, back to French.  Soigneurs, people who take care of you.  I think we take care of each other. 

We settled into the hotel room.  Edda falling promptly asleep between her bedrails.

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Wounded toe in a little band aid.

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Woke up really early and made our way into the mountains about 15 minutes away from the hotel.

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I was going to just drop off Jeremy and head back into town, but there was only one opening into the parking lot which was one car wide so I couldn't leave until everyone had started because they couldn't reverse traffic until the race started, so we hung around an extra hour in the lot.

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When he signed up for this race months ago, he was in less good shape than he is now, so they had assigned him to the 2nd wave.  But he petitioned to get moved to the first wave because he could tell from the weekend rides and who was assigned the first wave that he needed to be moved up.  I'm telling you, this is serious business.  Off he goes!

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After everyone started, Edda and I headed back into town to a breakfast at  Panera.

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And then a lazy morning at the hotel. 

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Then I drove back to the race start at about 1:30 pm where I found Jeremy just having finished.  The race is called Mountains of Misery because you spend 60 miles on relative flats and then the last 40 are hills with the finish on the very top of a mountain.  Then you take a bus down the mountain and they'll bring your bike down on a different bus.  Being Jeremy's soigneur means, primarily, that I listen to hours of discussion of race strategy, route elevation, other people's performance, his own bike qualities, professional bicyclist's performances, etc. etc. So the initial race strategy was, as he considers himself a good hill climber, to stay with the peloton the first 60 miles and then be strong on the hills.  He had a few people in mind to catch/keep up with, etc.  My only advice was to please not do anything dangerous and crash somewhere out there.

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After the race, we waited for his bike for a long time to be shuttled back to us.  Maybe an hour.  During this hour, Jeremy said that he didn't think that he'd do this race in the future.  He said that it was too far from the house and it wasn't his kind of race.  He likes to start off strong at the beginning of a race and fall apart as he gets closer to the finish line (fly & die) and this race isn't conducive to that.  It's a sit and kick race because you are conserving energy in the first 60 miles with the peloton and then you have a ton of hills which are slow and hard and mostly alone.  He said he felt like he was worried the whole time about managing his energy reserves and that he couldn't kick into a higher gear and therefore, at the end, he felt it wasn't a full race effort.  He said the race in NY a few weeks ago was much better - higher average effort throughout.

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we waited a lot.  The bike got delivered and we headed home.

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Jeremy, who was not driving, enjoyed stretching out his legs, analyzing his Strava splits, planning future rides.  A few hours into the drive, he found out the results.  He came in 12th.  You see the guy who came in 11th?  He's a former olympian in kayak - competed in three summer games culminating in a 9th place finish at the 96 games in Atlanta.  I'm like - dude you came in right after an Olympian, you absolutely cannot be bummed about your perceived effort.  He countered - but it's in kayak and he's 10 years older than me!  I'm like - really?  you've got to be kidding me, last time I heard kayaking takes a bit of aerobic capacity.  And then he conceded that maybe the NY race was an anomaly because he was on high dose of steroids for the Bell's Palsy (therapeutic exemption!) and maybe he won't feel that way on any other race ever again. 

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I was 10 miles into the drive home when I had the hunch that I had lost my wallet.  I pulled over and we searched the van and it wasn't there.  When I first arrived at the pick up site, Jeremy had asked if I had my wallet to buy a race jersey.  I had pulled out my wallet and held it in my hand as we wandered around the parking lot for an hour.  Then I remembered putting it on top of the van as I loaded Edda as we were getting ready to leave and dammit, I left it on top of the car as we drove away.  We drove back to the parking lot, asked all the people and left phone numbers and was feeling very discouraged that I'd have to replace everything in the wallet.  We started driving home, without the wallet.  Jeremy was like - just keep looking on the road, maybe we'll see it.  And we did see it, in the middle of the highway about a mile from the parking lot.  It had gotten run over and destroyed.  We picked up the wallet (it was a relatively quiet freeway) and then I walked the shoulder and the median and picked up more than half of the cash and most of my cards.

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My license is still OK.  It's a wonderful feeling to have found the wallet!  It isn't a mystery anymore what happened to it.  I lost about $40.  I hope someone finds it and buys something fun with it, though it's on the side of a freeway, I'm not sure who will find it.

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Now I finally get to buy a new wallet.  I bought this wallet at the Lot 1 in Singapore in 2006 right outside our apartment complex.  I remember I was very sad because of Edda's recent diagnosis and I wanted to buy something to cheer me up and I bought this orange wallet.  I've thought many times of replacing it, but it still served my needs and I didn't want to give up the memory.  But it is done now.  After being run over, it's ripped all over - unusable.  I'll have to get a new Costco card.

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Saturday, May 26, 2018

Wound, home alone, road trip.

After I gave Edda a shower today, I was trimming all her nails and found a wound about 0.75 in diameter on her pinky toe on her crooked foot.  I'm wondering if her day orthotics or night brace is rubbing that toe too much.  I put some ointment on it and a band aid and hopefully it'll clear up in the next few days.  I'll have her out of her night brace until it clears.

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After the her shower, we made our way to in Blacksburg, VA, home of Virginia Tech.  We are on a college visit without our prospective college student.  No no no no, we (Jeremy, me and Edda) are here for a bike race called Mountains of Misery tomorrow that Jeremy signed up a few months ago.  Originally, he was going to go by himself, but then it occurred to me that we could go with him - he had a hotel booked and what else was I going to do?  Laundry.  So I decided to not do laundry and go on the trip with him.  Mostly I think we haven't been spending enough time together - he'd been out of town a few days, we both did things on Thurs night that didn't involve each other and Friday night I was driving home from Philly.

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What also spurred me to go was Vince's absolute delight in having the house to himself for 24 hours.  You know how we have Sunday night dinner with family?  Vince hasn't been going regularly for a few years, which is fine.  I thought he didn't want to go because he didn't want to hang out and chat with family, but the real reason he doesn't want to go is because he gets to have the house to himself for a couple of hours and he LOVES it.  I asked him what he was going to do after we left and he said the first thing he was going to do was take off his pants and wander around in his underwear.

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Four hour trip to Blacksburg. 

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We did all the things we do together - quilt store, thrift store, small ethnic dinner, ice cream, bookstore (oh, and quick college tour - driving).

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Packet pickup.  Gels.  Yucky.

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Philly.

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Friday - quick trip to Philly and back to see my friend Vidya.  Left at 7 am, got home at 10 pm.

Thursday, May 24, 2018

Nat & Edda & Vince.

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I'm up too late!  Both Jeremy and I had evening plans and our regular Thurs caregiver needed to call out, so Nat came over and pinch hit.  Vince cooked his favorite no-parents around dinner - Japanese curry with carrots and potatoes.  I told Nat that I was going to be late coming home and that once Edda was in bed, she could let Vince know that Edda was tucked in and she could head on home because tomorrow is a work day and all, but I came home at 9:15 to find her and Vince watching YouTube videos in Edda's darkened bedroom.  Then we sat around and chatted for a little while - Vince climbed into Edda bed to snuggle with her as we finished our conversation and finally I had to shoo Nat home...  We all got to go to bed!

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Wednesday, May 23, 2018

Chicago.

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Hello loves, I have no pictures of my own surroundings today, so I give you a beautiful day in Chicago.  Jeremy texted these photos of Chicago from his business trip - he gave a keynote speech today to some people around noon and then headed back home to me.  He's home now which makes me happy.  I always, always feel that when he is away craziness ensues.  Vince is sick and is in full standardized state mandated testing mode and so it's been tricky keeping him feeling good enough to go through hours of testing everyday though really he is feeling pretty lousy. My side gig job is going crazy with my photo ping-ing all the time with various unsolvable problems related to aging & family members. Edda's is well, but I'm following up on various insurance snafus and her transitional meeting to HS is next week.  Various other things are happening which make me feel left out, unsure,  rudderless, blah, blah, blah. 

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Tuesday, May 22, 2018

Houseplants, death, Chicago, sleep app.

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With the arrival of Memorial Day, I moved the houseplants out onto our deck.  One year I moved them out too early when a warm burst of air gave me spring fever and then a cold spell hit and they all suffered terribly all being evolutionarily ill equipped to handle anything below 50F.  So I've now implemented a strict summer only deck residency.  Memorial Day to Labor Day.  I take poor care of my houseplants during the winter and the natural light is terrible in the house, so I can actually hear the plants sigh with relief and see each plant cell reinvigorate with regular summer rain and sunlight.  Turgid.  The plants are happily turgid and not flaccid like they are throughout winter.

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My side gig nursing job?  Today was the first day that one of my clients passed away.  I learned first thing this morning and I took it harder than I thought I would.  Threw me off most of the day.

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Jeremy is in Chicago for two days, one night.  He left the house before I woke up this morning.  By lunchtime he was having a deep dish.

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The family got me a new running watch for Mother's Day.  I have not been running much because I'm still working on my hamstring, but I'm enjoying the watch more than I thought I would.  It's not just a running watch, it's a smart watch, so it texts me and counts how many flights of stairs I do in a day. 

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It measures how much I sleep.  I average about 7.5 hours a night, I'm trying to nudge it up to 8.  If I want it to be a full 8 hours, I'll need to have lights out at 9:30.  I think that is impossible.  The one day I made it to 8 hours is the night before the royal wedding when I was having a sleepover at Vickey's house.  But my watch tells me I was awake at midnight for 20 minutes?  I don't remember that at all. 

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Monday, May 21, 2018

Backtrack. Table, ice cream, bike to work day.

Jeremy's camera on his phone is better than my phone.  His photo are way nicer than mine. He does send me the links to his photos, but it takes me a while to get them on the blog.  They are time-delayed.  Here's our newly refinished table.

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I think it looks more beautiful than it did before.

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One day this past month, we snuck out of the house to get ice cream without Vince.  Shhhhh.....hardly every happens.  Ben & Jerry's.

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Last friday was bike to work day.  They had a to-do in Rockville Town square.  Jeremy rustled Vince up early to get to the festivities.  Both the boys bike to their respective day jobs.  Vince won a pair of socks. 

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Sunday, May 20, 2018

Woods.

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Vince and I went into the woods today. It was hot and muggy.  Saw a frog. 

Saturday, May 19, 2018

This is water.

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Edda slept so well in her couch crib - from 9pm to 6:30am.  When Edda was ready for bed,  we shoved the back of one couch against the other couch to create a little nest so she wouldn't fall out and I brought all of Edda's sheets from home so she have a familiar smell & feel.  This way we didn't have to carry her up/down the stairs for her to sleep.  Vickey - true to form - started watching the wedding at 5 am (she often is up at 5 am on a regular day) in her basement as to not disturb sleeping Edda.  I went to the basement at 6:15, tiptoeing past a sleeping Edda on the first floor.  When Edda woke up, we moved to the first floor.  Vickey and Bert look way more put together than either me or Edda.

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Wedding!

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I brought over our keyboard because we aren't using it and Bert has recently shown interest in learning the piano - so I assembled it during lulls in the ceremony.

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Vickey cooked so much delicious food and I brought it home to a hungry Vince.  He went straight for the tub of cheeseballs.

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Then I went to Nat's graduation in College Park.  She's graduating with a degree in accounting.  I realized that I don't care very much for my own graduation ceremonies, but these graduation ceremonies that I get to go - not quite as a mother figure, but something like an auntie figure - are fun and meaningful to me (even though they are long.  oh so long...) .  When Edda was born, I didn't realize how many caregivers would become an important part of my life.  I've listened to stories about their loves, families, schooling, friends.  I've given advice when asked for it, I've seen them grow up and change and figure stuff out for themselves and I'm happy to be part of it.  I like thinking that when they tell their life story, there will be a part where they say - and I worked for a year or a couple of years for this family in Maryland and they had this special needs daughter and it was (fill in the blank here).

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Congrats!

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