All Posts Tagged ‘Lupus


Living Incurably In Heels


As I’ve mentioned before, there’s a Craps table in my living room.  It’s handmade and incredibly detailed.  I’m not a huge Craps fan, but when I was invited to family game of Craps the other day, I figured go big or go home.  I came downstairs in cocktail attire.  When else would I get the chance to wear my new faux fur jacket?  Well in all honesty,  I’ll wear that thing to the grocery store without thinking twice which will greatly embarrass Christopher.  But I’d like to think that in doing so I’m making the point that if you wait around for the perfect circumstances – whether that be a low-symptomatic day, an event or your dream vacation – you’ll never get the chance to wear your like-new Liz Claiborne $9.00 Goodwill coat.  Wear it today.



Getting dressed & staying dressed

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Quick note: check out my review of a nifty vintage-inspired turntable (aka, vinyl record player) that folds up into almost a briefcase here.

Back in March I wrote an article for the blog Counting My Spoons entitled, “Making it Work: Chronic Illness & Fashion.”  I wrote about how picking out an outfit the night before helps me silence a nagging little voice that tries to tell me that because of the various symptoms that potentially could hit the next day that maybe I should just throw in the towel (before the day even begins) and just stay home.  Now staying home is of course that right choice some days, but there are plenty of days where working, socializing, and of course shopping are even better for you health.  You can find that article here.

On that note, I’ll share a follow-up tip for those of us who tend to live in yoga pants and t-shirts:  When you can, stay dressed in your day clothes a little later than normal.  You might notice some changes in how you feel mentally if some days you wait until evening to get into your lounge/sleep clothes.  And if you have others in your household, it can affect your relationship with them as well, bolstering your self-esteem and how they view you and your productivity.  Here’s a collage of some of my favorite recent outfits that I liked enough to wear past dinner time (which is really saying something).  You’ll notice there’s a sweater theme going on, as fall is in full swing here in New England.  Give it a try on a good day: Get dressed in something you enjoy and then stay dressed, even if it feels like there’s no reason to.


Brought to you by: H&M, hand-me-downs, Burlington Coat Factory, hand-me-downs, Old Navy, and Target.

Have a good Friday.  Hope you’re well enough for your favorite outfit.



Living Incurably in Montreal


Last week Christopher and I returned from a 4-day trip to Montreal.  I’d like to share some of the strategies we used to limit my pesky symptoms impinging on our travel.  (Okay the day my symptoms are just “pesky” I’ll be jump-starting my career and running a marathon.  At the same time.  You know what I’m saying.)  Basically we had to focus on my illness a bit beforehand so that we didn’t have to think about it as much during the trip.

Until a few years ago when my counselor started coaching me on traveling strategies, I used to just dive into a trip full-on which always resulted in me spending half the trip seemingly distant & grumpy but really just devoting all my energy on staying on my feet. #Miserable  Now, with a more practical outlook, I enjoy traveling much more.  First, a few fun photos of our awesomely quirky hotel, a repurposed industrial building.

We choose this hotel because of its loft apartment-style rooms which allowed me to nap at one end with Christopher still able to read, be on his laptop, etc on the other end.  Or vice versa, when I’m up with pain at night.  I loved the large open space with sleek modern furniture.  Even riding the elevator to your floor was a memorable experience.  Their industrial-sized lift was decorated to look like a little parlor.  Heres a 1 min 20 sec video:

Now during a past cold-weather trip, I neglected to protect my face from the sun and ended up with a nasty photosensitivity rash.  This time I came prepared with a cold-weather hat with a brim.  Worked great.  (Holla H&M!)

We  also limited ourselves to 1-2 objectives each day.  I believe strongly in the magic of spontaneity, but sometimes it lands you far away from your hotel, never having seen anything interesting, extremely hungry and without anything to take your medicine with.  So we did a little planning each morning and improvised as we wished along the way.

Here I am  at the mesh-like globe that housed the United State’s exhibits during the World’s Fair of 1967.  After returning from our trip, I found out that back then both my mother and my mother-in-law were there, which made me feel all warm and fuzzy inside.  We also passed on the adventure of a long Metro ride and opted for driving our car for this one trip.  This way we could park across the street instead of walking 20 minutes from the Metro stop.  I will have to make amends to Mother Nature some other, more illness-friendly way.


On the following day we took a break from walking and got tickets for a double-decker hop-on/hop-off bus.  Not only did it take you to all the interesting places of the city but your view was from a second story perspective.  At one point I dozed off (#SleepDisorders) but no one except Christopher noticed (#BigSunnies).  I’d be up for a ride on one of these in any future cities I visit.  Tour companies: I will happily review YOUR tour in exchange for complimentary tickets.


It was a great trip, really liked the city of Montreal.  Oh right…we also got MARRIED!  Hit the town clerk’s office of the last town in Vermont before the Canadian border, just the two of us, just the way we wanted.  #KeepingItReal #Happiness #Love

I hope one of our traveling strategies (and maybe even eloping!) helps improve YOUR next adventure.




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This past Saturday I had a lot of fun being a viewer and speaker at Crystal Saltrelli’s Living (Well!) with Gastroparesis: The Coping, Stress and Anxiety Online Summit.  I thought I’d share a few of my slides on the blog today, and I just got an email from Crystal about posting all of them over on her web site for any interested parties.  I’ll let you know when that happens.  For now, here’s three of my favorites. Screen Shot 2015-09-29 at 3.16.29 PM Screen Shot 2015-09-29 at 3.17.20 PM Screen Shot 2015-09-29 at 3.18.34 PM

Have a good rest of your week!



Très chic tray

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$2.00 tray from a yard sale (solid construction but beat-up surface) + leftover scrapbook papers (a la faux vintage variety) to line the tray + few pieces of scotch tape = a rather happening tray perfect for late night snacks

What’s that?  Why, thank you!  It was a rather clever way to use up leftovers, wasn’t it?*

*such imaginary interactions are a classic sign of someone who has the personality for a fast-paced interpersonal career but has a body that insists on staying home to rest a lot



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This week’s contribution to #WhatIWore.  A touch of the eclectic and casual meeting attire.  My wardrobe is often what gets me out of the house and sometimes out of bed, as I wrote in a guest blog earlier this year.

Secondly, check out this awesome DIY-ness.  We made it.  I’ll have to write about it in a future post but right now I just want to sleep on it.


And lastly, I’ve been working on my presentation for the September 24th Living (Well!) with Gastroparesis Stress, Anxiety & Coping Summit.


Have a great rest of your weekend.



Living Incurably in color

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Recently Christopher’s daughter and I drove over to my (retired) Art Teacher Nana for a lesson in watercolors.  Did you know you can take a specific kind of colored pencils and turn your drawing into a watercolor by gently brushing it with a wet paintbrush?  They have a hard name to remember –  “watercolor pencils”  – and even Crayola makes them so fairly easy to find.  I slept through the second half of the lesson (#fatigue #not bored) where she taught about shading and perspective, but I still managed to finish a little piece I am quite pleased with. (See photo with blue notebook. That one’s mine.)  I took art for 8 years of elementary school and 2 classes in high school and have never created something I like as much as this little piece.  #GreatTeachersMakeADifference

Who in your extended family would enjoy sharing some skill or knowledge with you?  You should plan a date with them.  It can be an economical activity for kids too, as well a great way to bond with family.