Archive for September, 2007

A Happy Occasion

Jake and Kate got married today!!!

I officiated the ceremony. Ben was the audience and the “giver-awayer”, and Chaco was the best man/man of honor. (Note his bow tie.)

Here’s the happy couple afterwards:

Today is Jake’s “adoption birthday”, as my oral exams were October 1 and I told Ben that I needed another stuffed animal before then. (I left Jake’s predecessor, Clyde, in Vail, CO on a driving trip. Oops.) Anyway, he and Kate celebrated by opening presents! Kate got a dress, Jake got a half-finished scarf, and they both got Halloween socks and “grow-’em-yourself sponge things” (my term). Jake’s is a pirate ship (for fun; Bonzo wanted to be a pirate, and Jake didn’t care for Bonzo so much), and Kate’s is a turtle. They should emerge from the water in about 10 days, 600% of their original size.

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NeuroAid

My mom sent me a cryptic note, amist tons of presents from England, that described NeuroAid, an eastern “stroke medicine.” I researched it online, and it sounds pretty good. Now I’ve got three “out there” therapies to try:

* acupuncture ($2000)
* hyberbaric chamber ($6000)
* NeuroAid ($1150)

Now, the question is how to do them. If I want to determine which one helps the most, I don’t want to do them all simultaneously. I’ve already started acupuncture; should I continue it? Should I continue it with NeuroAid at the same time? Should I just do to NeuroAid alone? Or should I do the hyperbaric chamber? Or should I do all of them at once? (They’re rather expensive, so I don’t really want to do that. If something doesn’t work, I’d like to call it quits pronto rather than waiting it out. Except hyperbaric therapy, whose benefits appear to be several months offset from the time you spend in the chamber. Plus, it’d be nice to be able to tell other people what worked and what didn’t.)

Now, for the hyperbaric chamber therapy, I consulted Deacon Patrick, who runs the CO Brain Injury Support group on Google Groups. The group is members-only, and though it’s not too hard to become a member, I’m pasting in Patrick’s responses to my inquiries for all you curious people:


Hi there, all!

It's me again. I saw Dr. Stapleton, my physiatrist, again yesterday,
and asked her, "How much better am I going to get?" She said that two
years post-stroke (my first one, at least), I'm out of the window of
recovery as defined by doctors, but there are some far-out things I
could try. One of them is hyperbaric therapy, where you go into a
hyperbaric (high oxygen) chamber for ~hour/day for 40 days. Can
anybody tell me if this has worked for you? Particularly in terms of
your fatigue? I'd appreciate it!

-- Kathy =)


Dear Kathy,

I've been meaning to share this for a while, so thank you for the
question!

I have and regularly use a hyperbaric chamber. This is one of those
cutting edge therapies that, as you seem to realize, no one really
knows very much about how it effects TBIers. To my knowledge there is
no study that has been done on TBI and a hyperbaric chamber.

The idea is that as increased pressure (measured in atmospheres)
there is an increased amount of oxygen in the blood stream. This
increased O2 helps the brain heal more, faster.

Here's my personal experience with it. It is complicated, though the
end result is good. First, a bit about the chamber. The protocol,
which it sounds like you've heard, that is most commonly described is
40/hrs in 40 days. However, my chamber is a 4psi chamber, rather than
an 8psi chamber, so in theory the magic number is 80 hours. My
chamber is an older version of:
http://www.oxyhealth.com/Solace%20210.htm, which I bought used from a
wonderful family on this list.

I started out doing 1-2 hours per day for the first several weeks. I
instantly noticed a difference in that I felt better, but this was
short lived. I persevered for three weeks with daily treatments. This
was almost exactly 1 year ago, the beginning of October that I
started. I was having mostly "hard" brain fatigue days. By the end of
November I was at 33 hours in the chamber. I decided to take as long
as it took off for me to recover. 5 months after stopping I was
having mostly good days.

Currently I do 1 hour per month in the chamber. When I started up
again in May, I tried doing 1/week and 1/two weeks. that frequency
was too much. So, I am at 41 hours currently.

My theory:
The hyperbaric chamber works, but too much too quickly can take the
brain a long time to recover from. I have significantly more good
days than I did before beginning the chamber and I believe the
chamber is a large part of the reason why.

Why can too much too quickly cause the brain to need a lot of time to
recover? I suspect it is because, just like when we are injured, it
takes a long time for us to learn how the new wiring works, as rapid
changes happen in our brain we have to re-learn how the new wiring
works.

I also suspect that every TBIer will respond best to a different
schedule and that it would take careful experimentation to figure out
the best schedule for an individual. IS it worth it to push, do
several weeks at a time and take 5 months to recover? For some,
maybe. I certainly don't argue with the increased memory and number
of "good" days.

I'm open to figuring out a way for folks to try/use the chamber for a
minimal cost (which is how it was sold to me), but so far I haven't
come up with anything. I live west of Colorado Springs. Ideas, anyone?

Blessings,
Patrick


Thank you for your explanation, Patrick!

My doctor wants me to go for 40 hours, 1hour/day, 5-7days/week. Do
you think that's too frequently? It seems to be for you. Is the
optimum schedule of therapy once/month, do you think?

There is now a chamber in Boulder at $150/hour. How much did your
chamber cost, if you don't mind me asking?

Just so I understand, you're saying that you felt really crappy
"right" (5 months) after the chamber, but after that you felt much
better? I don't want to quit the therapy too soon because I feel
lousy.

Thanks for your insights!


-- Kathy =)

Dear Kathy,

It's important to understand my experience is only one data point.
Hardly a comprehensive study, but my experience with the hyperbaric
chamber may be common with what other TBIers experience. I don't
know. In other words, it's a wild arse guess how applicable my
experience is to anyone else's.

So, I'm not sure how to answer your questions, other than with a
question. (Yeah, yeah, that's what we religious types often do, isn't
it? Grin.)

-- Would you prefer to allow your brain time to adjust to the healing
as it takes place or do therapy hard and fast? Either way, I
recommend you keep a log or journal documenting your experience, so
we can begin to have more than one data point.

If you'd rather do it "hard and fast", then be prepared to feel
horrible and not be able to do much starting about a week into the
therapy and for however long it takes your brain to "catch up" with
the healing that occurs.

If you'd rather allow time for your brain to "catch up" as you go,
I'd recommend you start with monthly treatments of one hour. If you
do not notice a decrease in your function (because of your brain
needing to "catch up"), then try every 3 weeks, increasing the
frequency until you notice ill effects, then backing off to the
previous frequency.

I hope that helps. If your doctor or therapist has other TBI folks'
experiences with the hyperbaric chamber, please let me know. And
please share your experience with it also. I'd love to expand my
understanding of how this therapy works for us brain bludgeoned!

Blessings,
Patrick

I’m going to talk to Dr. Stapleton tomorrow and get her opinion. If you’ve got thoughts, feel free to chime in!

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Some Things to Consider

It’s been a busy couple of days! And yes, I’m still sick, or at least getting there.

Yesterday I tutored fourth grade at a Boulder elementary school. The classroom was a zoo. (I said that Las Vegas was a zoo, too; I’m sorry to repeat words, but I can’t think of a synonym. There were like 20 kids staying for tutoring, 8 tutors, and a whole bunch of crap lining the room — posters outlining what grammar they had to use correctly in their essays, bins of paper, crayons, etc. There wasn’t one horizontal surface free of it. And the kids were all yelling.) I AM going back, however; I agreed to, for one thing, and for another, I think maybe it’ll do me good to put up with the chaos. But good God, I hope my kids don’t go to a school like that. Oh, and did I mention that my kids misbehave? They denied having any more work to do, even though they’d showed me their assignment sheet and they DID have more work to do, and they also told me they were allowed to leave.

“Are you allowed to do that?” I asked.

“Oh, yes,” they assured me.

“Hmm … I’m going to go ask your teacher.” No, they’re not allowed to leave, she told me! Make them sit down and work on homework.

I picked up my new sunglasses yesterday, too. They are DARK. I can actually walk out on the deck and enjoy it while I’m wearing them! =) Yay!

Then, as I was driving to Starbucks for my afternoon pick-me-up (just chocolate, not coffee), I got pulled over. The cop walked up to me and said, “Your registration has expired.” I don’t think I’ve told you about this yet: my registration has most definitely NOT expired. What really happened is Ben got it in the mail like 6 months ago and accidentally let Bonzo eat it.

“My dog ate the sticker,” I told the policeman.

“Yeah, I’ve never heard THAT one before.”

“You haven’t met my dog,” I wanted to reply, but decided against it because I didn’t want to tell him about putting Bonzo to sleep. Eventually, I found my registration, proof of insurance, and my license, and we were good to go. Ben got me a new sticker at the DMV yesterday so I hopefully won’t have this problem again.

So fast forward to yesterday (which is Wednesday, because I went to sleep in between), when I woke up at the “crack of dawn” (8:45 am) to go to acupuncture. Melissa recommended a therapist for me when I asked her, “How much better am I going to get?” I spent a half hour explaining my situation to Rachel, my acupuncturist, and 45 minutes getting stuck with needles. Did it wake me up? No. Make me less sensitive to sound and light? No. It does, however, cost a lot. :( Rachel said I shouldn’t expect any results for a couple of weeks, which seems like a long time to me … maybe I’m just impatient.

Ben drove down to meet me for some lunch at Taste of Philly and then we headed to Dr. Stapleton. She reports that acupuncture really DOES work, but not so much on fatigue. She uses it to combat pain in her patients. “Good that you’re doing it, though,” she offered, as if that’d make me feel better. While on the topic of miracle cures, however, she pulled one out of left field. “I’m not necessarily in favor of this, but I am involved in it and as a last resort it’s certainly worth a try …” Last resort? Am I really that far gone? I plan to continue recovering, mind you! Most doctors say that after a year, that’s it; you’re toast. I am not like that. I have recovered so much in the last year (once I got my medicine straightened out) compared to right after my stroke.

Anyway, returning to her proposal: hyperbaric chamber therapy. I’d drive to Boulder once a day for 40 days and sit in this pressurized chamber for an hour. It might work, she said, because the oxygen prompts your brain to heal: blood vessels will form in the dead tissue again, and the neurons will once again fire across that gap, thereby eliminating the elaborate detour they currently have to make. However, none of this is proven. My mom looked it up online, and in the only study she could find about it they actually terminated it early because the hyperbaric group was doing worse than the control group! The biggest downside to this is the cost: $6000. It is EXPENSIVE. However, after a loong conversation with my insurance company this afternoon, I think that they may cover it. If they DO indeed cover it, I’d like to try it. At this point, I’m willing to try ANYTHING to speed up my recovery. Acupuncture, hyperbaric chamber therapy, magnets, dancing to the gods, you name it. Sign me up.

To lend a slightly more upbeat tone to this post, I received my quilt in the mail! Mom put a backing on it, stitched around the green stuff, and even added a little embellishment to some of the white in the sky, and it looks wonderful. I purchased a curtain rod at Target, and ta da!

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“Ka”, and “Can I See Your ID, Please?”

I have *finally* returned from a weekend in Las Vegas! Goodness gracious, what a zoo. Ben and Craig put us up at the Wynn on a “poker rate”, so we got to stay in style … except for the “C” floor. The casino level is mind-boggling-ly noisy, busy, visually overwhelming, and overall overstimulating. I know a few tricks to make it more pleasant, like wearing my earplugs or skipping it entirely en route to the pool by taking the elevator to the “S” (spa) floor and then taking another elevator to the pool, but honestly … it doesn’t help all that much. The planners have done a good job of making the casino sound and look overwhelming; it confuses your brain and makes you do dumb things like bet too much.

Ben arrived late on Thursday (like midnight late), and I was in bed trying to keep my eyes open. If I could tell you one thing I did WELL on this trip, it was sleep. I was exhausted every night and fell asleep with no problem. Ben, on the other hand, turns into a night owl in Vegas. One day, he promised me, “I’ll be back in a couple hours!” at my bedtime at 10:00 or so … and he didn’t reappear until 6:30 the next morning! Craig, on the other hand, is an early bird in Vegas; he generally went to bed with me at 10 or 11 and reemerged from our room at about 8 the next morning.

On Saturday night, we made the trek up the Strip to the MGM Grand to see “Ka”, by Cirque du Soleil. It was mighty impressive! There’s some plot — twin prince and princess practice swordfighting with each other, get interrupted by bad guys, go on separate adventures, fight bad guys, win, fall in love, and come back to inherit the throne (I think) — but it’s pretty hard to follow. (At least for me and Craig; “You guys didn’t get it?!?!” Ben exclaimed when Craig complained about it afterwards.) There’s no dialogue throughout the whole show, which explains some of my difficulties understanding it; there’s just music. HOWEVER, the choreography and costuming was AMAZING. In my favorite scene, which was later explained to me to be the grass (I originally thought it was the forest, but Ben pointed out that if it were the forest, you wouldn’t have ginormous scorpoins climbing the trees), people fly every which way. Yes, I did say “fly” — like in Peter Pan, the actors fly using harnesses suspended from the ceiling. Everything was green and blue — the human fliers were in blue costumes in a sea of green grass. It’s hard to describe, but it is really cool.

Every once in a while, I’d stop by the poker room to collect my husband. On the last of these occasions, before going to the Buffet (where I ate shrimp and crab’s legs to my heart’s content), he asked me to go get him some chip trays. “OK,” I replied. I went and got the chip trays. However, at the table I was accosted by a security guard!

“Excuse me, are you over 21?” he asked me, very politely.

“Yes, I’m 25 — no, 26,” I answered. (I can’t remember!)

“OK, do you have ID?”

“No, it’s up in my room,” I replied, fully aware that sounded like I was trying to fool him into thinking I was 21 when I was actually, say, 18. But I remembered that I was getting chip trays for my HUSBAND! How many 18-year-olds are married? “I just need to get these chip trays for my husband,” I pleaded.

“You should carry ID on you at all times in the casino. You may take the chip trays, but please stay out of the poker room.” Good grief! I was partly flattered — I assumed that I looked older than my age, due to the strokes and my wrinkles — but partly offended! “Stay out of the poker room.” Ben never gets asked for ID. Neither does Craig. BITE ME.

Oh, and the slot machines. Jake has been planning for some time to make it rich on the gorilla slot machine. If you remember last time, you might think he had a shot at it, too. It didn’t start out well, though. I had only $8 in cash, and he burned through it mighty rapidly. Already $8 in the hole, and it was only the second day of our trip! “Those dumb slot machine people,” Jake grumbled. “They need to turn the machines ON! I always win at the slot machines!” So on the morning of our departure, we let him try again. “At a different machine. This time I tried the ‘Jade Monkey’ slot machine.” And … he won! He won back his $8, and then he won some more! Good going, Jake! =)

Now, I’ve got a sore throat … I’m pretty sure I’m coming down with the cold Ben nursed during our entire trip. Fun!

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Chasm Lake, Rocky Mountain National Park, CO; Diamond Lake, Off the 4th of July Trailhead, CO; and My Second Stroke-iversary #1

I’ve been having a blast since we returned from San Francisco! Craig met us at the airport, and we drove him home. Ben, unfortunately, had to leave again on Monday afternoon, but Craig and I have been hiking in his absence so it’s sort of OK that he’s gone.

Our first hike was yesterday, Tuesday (because the weather on Monday was terrible). We drove up to Rocky Mountain National Park, had lunch, and turned back to the Longs Peak trailhead. We didn’t do Longs, of course — it’s technical now anyway — but we DID make it to Chasm Lake, which is 2000′ below the peak. (Directly below the peak. In the summer, you can see people climbing the cliff above the lake to the top of the mountain!)

It was kind of a rough hike. 8.4 miles roundtrip — more than I’ve done since my strokes — and 2200′ elevation gain. What’s more, I realized about halfway down the mountain that I’d forgotten to take my energy-giving medicine yesterday morning! (And my anticoagulant, and my ADD medication, and …) I’m really proud that I made it all the way to the lake and back.

I have actually been to this lake before, in 2000, when my family came to Colorado for vacation. Ben and I did it to make up for not getting to the top of Longs Peak (which is still a goal of mine, by the way), and two days later, we returned with my dad in tow. My dad was going through a mid-life crisis that year, which he tried to cure by climbing Mount Princeton in central Colorado. That didn’t go so well. When the ranger told my dad that “No problem! You can make it in your Astro van!” I don’t think he appreciated that *making it* and it being *easy* were two different things. Halfway up, his knuckles were white from grasping the steering wheel so hard. He finally asked our advice, and Ben said, “Well, I’d start by not driving with one wheel in the rut, but straddling the rut.” We finally made it to the ranger station, where we began hiking. We didn’t make it to the 13,000′ summit because of inclement weather. Poor dad. I guess it taught him not to choose a hike because the mountain is named after your alma mater.

Anyway, when Ben and I saw Chasm Lake, we knew we had a winner. It was a hard hike, but doable, and there’s some scrambling at the end, which my dad LOVES. At the end of it, his middle-life-crisis seemed to be solved. =)

Today we embarked on a slightly less adventurous hike. We were both a little sore from yesterday (well, actually, Craig says it takes him 24-36 hours to really get sore, but I’m banking on it), so we decided to go to Diamond Lake. I’ve been there before, but over two years ago. It was beautiful!

One advantage to this hike is that unlike yesterday’s journey, we could take Chaco with us. Boy, was he excited. He started whining 15 minutes before we left! He whined incessantly in the car on the way there, so I showed Craig how to use the spray bottle of vinegar. He heard me say “vinegar” and “aim at his eyes” and he wimped out, fearing he’d cause permanent damage. “Don’t worry; it doesn’t hurt him *that* badly,” I assured him, but no luck. So it was a noisy ride. When we finally got to the trailhead, I clipped Chaco onto the waist strap of my backpack, and we were off!

When we finally reached the lake, Craig was ready to throw sticks for Chaco to get. I told him about Chaco’s sometimes-timidness of water, but there was none of that today! Chaco retrieved ALL the sticks Craig threw! Then, I mentioned to Craig that Chaco really likes BIG sticks. Like logs. And then Craig produced …

… a huge log! Chaco was in seventh heaven. Craig threw it way far out in the water, and Chaco got it almost every time. Eventually, he left it there, and we thought that maybe, just maybe, Chaco was tired.

“Let’s play the calling game!” I shouted to Craig. “We stand about 100 yards apart and call Chaco back and forth between us. It’s a great way to dry him off and tire him out.” So we called and called and called. My dog was not tired. We called some more. Not tired. Chaco had more energy today than I have seen him with in the past two YEARS. Goodness gracious. It was a successful hike! (Chaco did eventually get tired, by the way. Just not enough. He still whined on the way home.)

That’s how I spent my second stroke-iversary. That’s right, folks, it’s been two years since I had my first stroke! (Well, not counting my zeroth one.) I am glad that I’m recovering, at least somewhat, from both of them, though it is slow. Here’s to another year stroke-free!

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San Francisco

We had a GREAT trip to San Francisco! On Friday, we woke up at nine o’clock in the morning, showered, ate the hotel’s free breakfast, and drove to Guidewire. Everyone there is so NICE! I especially enjoyed meeting Priscilla, a woman who suffered a head injury in a car accident several years ago. She had trouble reading and writing afterwards. After she explained that, I tried to explain my symptoms, but all I could think of was, “I’m tired.” She did say, though, that she was also tired, and she got over it, so perhaps there’s hope for me yet.

Jake in bed with a page of United’s in-flight magazine:

While it was great to meet Ben’s coworkers, it was also a little awkward. I felt like “the wife”, not a former Caltech student with a master’s degree. Nobody asked me what I do (thank goodness!), but I could feel it. It’s probably all in my head — I’ve been warned about the blow to your self-esteem that a stroke can give you — but it still sucks. Oh well =(

Benihana, from across the bird sanctuary:

Afterwards, we lunched at In N Out, which we lack here in Colorado. I got a double double without the cheese, animal style, ketchup instead, and no pickles (yuck!), fries, and a chocolate milkshake. Boy, did it taste good!

Then, we drove to Half Moon Bay, a town by the shore. We enjoyed a romantic walk along the beach, and then I dragged Ben in search of the horses. I’d read that you can “rent” a horse to ride along the beach, and that sounded *totally* cool to me. We found them at a place called “Sea Horse Ranch” a couple of miles north of the beach we stumbled onto for our walk. After signing away our lives, they paired me up with a horse named Zapatos, and Ben up with one named Mindy. We were joined by three Mexican dudes and, as our guide, a Spanish-speaking guy whose name I don’t know.

The horses were slow, they warned us; they lied. Zapatos liked to be in front, so when anyone passed him, he’d trot to regain his position. On the beach, he galloped! I wasn’t quite ready for that. However, as much as I’d like to complain about it, I can’t. I LOVED going fast. I probably looked like a doofus, but I had fun. =)


(Do the stirrups look too long? I ask because they FELT too long, and my butt hurt like the dickens when we got off. Sitting down? On, say, the toilet? No thanks!)

After that, we came home and had dinner at the Elephant Bar next to our hotel. Then we went back to the room and Ben announced he was leaving to play poker. He did pretty well, so I’m glad he went, but I didn’t do so well on my own. I could NOT fall asleep! I’d say I finally dozed off around 1:30 am. Ben got home at 4:00 am. We were pretty drowsy the next day!

However, we were up and at ‘em anyway because we had tickets for a 1:45 departure to Alcatraz! We drove — the train would take a half hour, and Ben didn’t want to spend so much time getting there — and parked at Pier 28 for our Pier 33 departure. We paid our $10 and then realized that Pier 33 was significantly far away because all the even numbered piers are lumped together on one side and the odd numbers are on the other. We had quite a walk ahead of us!

I was getting hungry. Well, not so much hungry as tired, but I’ve learned to recognize the “tired” as “hungry” recently. (Remember how I said I was exhausted in my last entry? I felt ten times better after some protein — i.e. meat — at Benihana’s.) I pulled Ben into the first restaurant I saw. “I’m hungry,” I explained, “and we’re eating here.” I was prepared to fight for it, since the restaurant looked expensive, but Ben didn’t disagree. !!! We had a nice lunch.

Then we got to the boat! We had to wait in line because there was some guy taking pictures of people in front of a poster of Alcatraz. Geez louise. I started to take my own picture of people from behind him and he yelled at me! Then, when we got up to him in line, we walked around him and he yelled at us for cutting. Good grief!

Unfortunately for us, the ferry ride was short. Ben wanted to sleep, and I wasn’t complaining about a chance to sit. But we arrived at the island, got off the boat, listened to their “mandatory introduction” for about thirty seconds before deeming it worthless, and then took off up the mountain to the cell block, where we got our free audio tour.

I’m glad I’m not a prisoner, because living in one (at least one like Alcatraz) looks miserable. They showed us some of the cells as they were during the 50s, when people actually lived there; some inmates did watercolors, some knitted, but they ALL looked really bored. (Actually, it doesn’t seem all that different from therapy …) The audio tour outlined some of the attempted escapes, which were impressive. People actually tunneled their way out of the concrete bunker with spoons.

A view of the city from Alcatraz:

We were pretty tired at the conclusion of the tour. After taking the boat back, we opted to go to Starbucks before catching the MUNI back to our car. The first Starbucks we went to was closed on the weekends. The second one closed at 2:30. Third time’s the charm, thank goodness; we got our caffeine. By then, it seemed sort of silly to hop on the MUNI to get back to the car; we just walked.

Here’s the home of Second Life, which we passed walking back to the car:

We drove home, hopping off an exit early to get some dinner and avoid a major traffic jam. We tried a Chinese place, where we were the only people in the entire restaurant speaking English. I got Shrimp Chow Mein, which only contained 7 shrimps. They were good shrimp, just lacking in quantity. Then, we headed home and went to *bed*.

It was a great trip. Thank you, Ben, for letting me tag along! =)

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I made it!

I made it to San Franciso! There’s not much to tell. I woke up “early” (8:30 am), showered, got dressed, played frisbee with Chaco, and then drove down to the Park ‘n Ride. I took the bus to the airport. There was NO line at security, so I thought I’d get whisked through, but I got stuck in the “bad person’s” line, so it took a little longer. No problem on the flight, but I was exhausted. I haven’t been getting to sleep until midnight, which is probably a consequence of my medicine. Last night, I was EXHAUSTED. I talked to Ben and called it quits. However, once in bed, I couldn’t stop fidgeting. I don’t fidget in the morning, which is why I suspect my medicine. Anyway, I took it at 9:00 this morning, so we’ll see if it wears off better tonight.

Anyway, I got to the hotel just fine … now I’m just waiting for Ben! =)

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