Vermont Looks Good on Her

The weather is weird. We’ve gotten a total of mayyyybe 1 inch of snow in SW Connecticut over the last few months. It’s WEIRD. This weekend we decided we needed snow and space, vistas, mountains, and adventure. I love hiking in the Hudson Valley near where we live but I realized recently that I really miss the expansive views we had of the Blue Ridge Mountains from all of our hikes out of Charlottesville, VA, something Vermont offers. We set out for Vermont on Saturday and stayed at a fabulous, pet friendly AirBNB in Guilford, just outside Brattleboro.

On our drive up we stopped at Atkins Farms in Amherst, MA for their infamous (to me) apple fritters. Pro tip: If you want to try these world class pastries, make sure you call in advance to reserve because they fly out of the bakery department. Hopefully for you, you’re not going up on the same day as me because I reserve a half dozen within minutes of them opening up. They freeze fantastically and are perfect for days when you’re jonesing to feel the magic of the Pioneer Valley.

On Sunday morning we made our traditional pre-adventure feast of bacon, eggs, avocados, and sesame bagels before heading out to hike Mt. Wantastiquet. I put Olive’s snow booties on when we arrived at the trailhead thinking I would take off running immediately afterwards so she could chase me, making it a fun time. Within seconds of her feet hitting the ground three of them flew off in different directions and she started attacking the fourth. I think they might be a bit on the small side. *face palm*

We ran into one group of hikers coming down near the trailhead on our way up the mountain, and another on our way down, but aside from that we had the place to ourselves. It felt like magic in a way that only a quiet, snowy forest can.

We got to the top of Mount Wantastiquet around 11:50am and Brattleboro’s annual ski jumping competition was scheduled to start at 12:15. We decided to wait it out because we had an awesome – albeit distant – view of the ski jump.

After many photos and lots of shivering, the first jumper dropped into the chute at about 12:18. We knew they would look like ants from where we were standing but we were not prepared for the tiny specks of dust that all but disappeared with the blink of an eye.

Our trek down the mountain was beautiful and Olive led the way.

We followed our hike with sour beers at Hermit Thrush brewery in Brattleboro where Olive slept on “place” for a solid hour before we headed out.

Have you been to Vermont? To Mount Wantastiquet? What did you think of the views?

A Weekend in Portland, Maine

We moved to Portland! Well, at least for the month of August. We made it in late Friday night after the actual most dramatic afternoon of trying to capture the bears. 5 hours of pure, unadulterated torture, complete with fire and urine. Story to come.

After sleeping in on Saturday, we decided to go out for breakfast.  It was raining and hotter than Hades and places in Portland don’t have air conditioning *blink* because heat waves like this are relatively rare. We started our morning at The Bayou Kitchen, and after putting in our name, stopped in at the local (air conditioned) art store. A cool 15 minutes later, the hostess at The Bayou Kitchen called to tell us our table was ready. D and I both got breakfast sandwiches with spinach and tomatoes; I chose bacon with a side of rice&beans and he chose andouille sausage with a side of home fries.  They were served PIPING HOT and on a day that was only a little bit cooler they would have been PERFECT, but mine had me breaking out into a sweat.

Post-breakfast, we headed home and waited for a pause in the rain before going out for a run around Back Cove. It was our first proper run together in maybe three years and it felt so good to be doing one of our favorite things. We alternated between running and walking every quarter mile (the cove is really well marked!) which is what I need to do to ease my knee back into things. I can already tell that my lower joints are going to be squeaky but I feel ready to train properly for the first time since the accident.

After showers we went to the grocery store before a visit from my in-laws. They stopped by with cookies and granola from Big Sky Bread Company which was on point!

D and I had plans to go bowling Saturday evening but I was so wiped out after the run that we stayed home to play with the bears and order Grubhub.

On Sunday morning we took the 9:15 ferry from Portland to Peak’s Island for a half day of kayaking with Maine Island Kayak. We got off the ferry at 9:45, hit the public library for a bathroom break, and were on the water by maybe 10:15-10:20ish after handling the procedural “shtuff” involved in a tour like this.

There were four couples – three of us celebrating our anniversaries! – of varying skill levels.  The company’s owner, Joe, was a FABULOUS tour guide, and upgraded D’s kayak to something more suited to his skill level.  D and I expressed an interest in history and birding and Joe made a point to talk to us individually about each.

Our first stop was a wreck off the coast of Diamond Island where there was an osprey’s nest, Eider ducks, and a slew of cormorants.  I decided to be the last person paddling through the wreck because I wanted to have time to take photos.  Unlike the fauna on my recent trip to the Galapagos Islands, these birds were incredibly skittish.   I didn’t take that into account and by the time I was paddling through, all but one of the maybe eleven cormorants that had been drying off their wings had hopped back in the water to get away from our flotilla.

After the wreck, we headed back towards Portland and the Civil War era Fort Gorges.  You guys this place is SO COOL.  We paddled past a slew of gulls and cormorants to pull our kayaks up onto a beach.  Joe gave us some safety recommendations (it’s dark inside and if you can’t see the floor, there probably isn’t one) and then we set off while he stayed with the boats.  The stonework is incredible and we could see the tracks that the soldiers installed for the canons.  We climbed the pitch black stairs – using our camera flash for light – to the top and were rewarded with a clear view of the harbor. After half an hour of exploring we got back on the water.

We kayaked to House Island and then across to Peak’s Island before paddling down the shoreline back to Maine Island Kayak.


We pulled our kayaks ashore, picked up our valuables, and said goodbye to Joe before searching out a lunch spot.  We put our name in at the Cockeyed Gull – Joe’s recommendation – and Shipyard Brewing Co and then wandered around to pass the time while we hungrily awaited a table, ultimately choosing the Cockeyed Gull. We split fish and chips and the grilled scallops, and I devoured the watermelon (with wasabi dressing!!!) salad. Wasabi, and all things horseradish, is one of my favorite flavors and my absolute favorite spice!


We finished lunch just in time to catch the 2:45 ferry.  We got great seats on the way back and the view pulling into Portland’s ferry terminal was perfect!  After landing we went to Shipyard’s tasting room.  They had fun beers and sodas available for tasting, but the tasting room was in the back of the space, behind the gift store, and completely windowless.

We stopped at a corner grocery store for dinner supplies before hopping in the car and heading back to the bears.  We have a few more kayak outings planned for the month and this has me eager to get back out on the water!

Put on your oxygen mask before assisting other passengers

Dear Diary,

This is what he was elected to do. This – these judicial appointments – is what I was most scared of leading up to November. This is how he will Make America Great Again. And this is how 40 years of progress roll off a cliff.

I’m signing off of the news for now. Sure, I’ll be on social media, compulsively checking fashion bloggers on Instagram. But I give myself permission to step back. I have important things to do that nurture my mind and soul and I can’t connect to those parts of me when I’m reading every rumor about the goings on of Gilead.

I’m not going to be as productive this week as I planned. I need to re-prioritize (yoga, time with friends, snuggles with bears, editing my talk for Project Sleep) and refamiliarize myself with my Trump era guidelines and that needs to be enough. It is enough.

I do believe I will get through this but I also think I will have to fight tooth and nails for what is right, because there aren’t always good people on both sides. What I know now that I didn’t in February, 2017 is that I need to put on my own oxygen mask before assisting others.



The Bear Bulletin: Vol 7 (Deluxe Edition)

This is part of an ongoing series in which I round up a week’s worth of bear photos along with some thoughts on my photography.  You can find previous volumes of The Bear Bulletin here.

I played with our 16mm lens this week and had more fun shooting around than I have in a few months.  Perhaps due to my subjects?

The photos of Misty Bear and Nimbus were taken under our dining room table and the bears were so patient while I stuck my camera just inches from their perfect little faces.  The light was so interesting and I really enjoyed editing these photos.  I played around a lot with the warmth of some of Misty Bear’s photos to get more of a sepia feel. The afternoon had a very comfortable, lazy-day, feel to it.  I love my little ladies!

Are you ready for the “deluxe” part of The Bear Bulletin?  Take a deep breath and make sure you aren’t completely cute-d out.  Because your heart might explode.

You’re welcome.

Happy Caturday, friends.

Xyrem Vol. 6: One Year

I took my first dose of Xyrem 365 days ago TODAY.  Am I better? YES! Am i still sleepy? Yes.  About 2 months ago the reality of my narcolepsy set in: managing my sleepiness is, and always will be, something I work at every single day.  You might think – “Well, yeah. You have narcolepsy.  That’s how this works.”  But I really thought that Xyrem – this narcolepsy wonder drug – was going to be something that I ramp up over the course of a year, and then I would get to the therapeutic dose and be a normal, wakeful human.  That is so far from the reality.

This last year has been a shitshow.  I’m talking “let’s take graceful photos of each other under water” kind of shitshow. Like…where you work so hard to get things to come together and then the best photo from the series is the one above.  I missed birthdays, sales tax deadlines, and still haven’t sent my best friend her wedding gift. But I let myself sleep without guilt and I took time to mourn the years I lost and the life I’ll never live. I’m free in a way I never was before I had a diagnosis and a drug that gave me dreamless sleep.  My hallucinations around sleep are drastically diminished and the same thing goes for my disturbing dreams.  These days, waking up from nightmares (like the one I had two nights ago about dogs that drown humans) is indicative of missing the alarm for my second dose (I.e. I spent too much time in REM sleep – which is my narcolepsy brain’s default – rather than Xyrem sleep).

I think that one of the best ways to describe the impact of Xyrem on my life is as a patronus.  Before Xyrem, I tossed and turned at night, and woke up from horrendous dreams only to spend hours slipping in and out of hallucinations.  It was a veritable prison.  Now when Xyrem hits me, I go to sleep and I generally wake up 2-4 hours later feeling good.  It wasn’t until my REM started getting under control that I realized how negative of an impact the nightmares and hallucinations actually had on me.  Xyrem, I will be forever grateful to you for that.

What Xyrem hasn’t given me, I’ve gotten from my community.  This diagnosis pushed me to open up about my disease to my family, friends, and ultimately the world wide web.  I made incredible friendships through this blog and met people in the online chronic illness community who inspire me and cheer me on.

It turns out that living with narcolepsy is more of a marathon than a sprint.  Perhaps thats okay.  We all have our battles and mine is teaching me to be present.

Visit my narcolepsy resource guide here, and read all of my posts about sleep here.