All Posts Tagged ‘Photosensitivity



This is my I’m ready for #Summer #Lupus #Photosensitivity Door.

@OldNavy @LupusOrg @TargetStyle



Instagram inspiration is sometimes what gets me out of bed in the morning

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Earlier this month I wrote this guest post on Julie Ryan’s blog, “Counting My Spoons.”  The topic of my post was Making It Work: Chronic Illness and Fashion.  In my own little way, I discussed anxiety, bras, Mr. Tim Gunn, photosensitivity, scarves, bargain shopping and more.  As a follow-up to that, here’s what fashion has been catching my eye recently.  Lots of them are screen-shots I save on my phone; I like to consult them when I’m feeling uninspired:

Having Fibromyalgia, I’ve been seeking out clothes that don’t impose painful waistbands and snug shoulder seams on my already achy muscles.  Having Lupus and its resulting photosensitivity, I have to seek out clothes that cover as much of my skin as possible.  In the beginning of the illness, I thought that just meant if I was going to the beach for the day.  Now I know I need to be covered even if I’m just going out to run errands.  And I skip the beach entirely.

By following the lovely Instagrammers @hautehijab, @hipsterhijabis and @themodestymovement, I’m starting to see that covered-up does not have to mean frumpy and unstylish.  These ladies, who dress modestly as part of their religious devotion, always look so chic.   I really admire them.  And I’ve noticed that when I try out my own version of these modest outfits, people treat you differently.  Women are friendlier.  And men are much more respectful.  Plus I’d like to think I’m setting a good example for Christopher’s almost-twelve year old daughter.

I’ve always had a thing for scarves.  If you look at my high school pictures, I’m the only one sporting some jaunty little neck scarf. I guess it was my own little trend, one that no one else felt the need to recreate.  Now I’m into long thick scarves, as you can see from the inside clothesline I made in the bedroom:


I hope you get the chance to check out my article.  Even if fashion isn’t your thing, hopefully it will illustrate my point that one little seemingly superficial hobby can be a worthwhile diversion from anxiety over your symptoms, freeing you to have a Living Incurably day.

P.S. Did you know Living Incurably is now Instagram – @LivingIncurably



My Guest Post on the blog, “Counting My Spoons”


The lovely Julie Ryan is hosting a guest post of mine over at her blog, Counting My Spoons.  Click here or on the image below to read the post entitled, “Making It Work: Chronic Illness and Fashion.”  

Would you indulge me in something?  I think it would be so fun if everyone posted a picture of themselves wearing their own favorite outfit – either tweet it and tag me @LivingIncurably, Instagram it and tag me @LivingIncurably or post it on my Facebook Page   Can’t wait to see you and your fashion!




Chat Pack. Probably not available in North Korea.

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Many (read: most) nights by the time I’ve finished cooking dinner (read: 3 dinners – 1 vegetarian, 1 picky eater vegetarian, and me the carnivore) I barely have the energy and wherwithal to eat said dinner, much less hold up my end of hosting pleasant and interesting dinner conversations.  In comes the Chat Pack.


Someone grabs a question out of the box and everyone at the table gets a chance to share their answer.  It’s not trivia like trivial pursuit, just…chatting.  (An example as seen below, What is something you really enjoy doing that is a chore or bore for many people?)


We’ve gotten them out when we have dinner guests as well, and it seemed to result in laughing and getting to know people better.

It also comes in handy when Christopher’s daughter has a friend sleep over and I don’t want to subject our 11 year old guest to Christopher and I doing a two-person diatribe on what Seth Rogen during his Howard Stern interview, how I think we’re the most patriotic people on the block because we digitally rented “The Interview” on Christmas day, and how North Korea can just s&ck it.  You’ll probably never read that phrase again on this blog but such a sick delusional regime calls for a little crude language.  And how lovely that I live in a country where I have the freedom to blog about such opinions.

This Chat Pack is available on Amazon for about $9.00, and other versions are out there as well.   Happy chatting.



Living Incurably copes with condition by crafting – aka – fatigue, fogginess & finger work

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If you’re hesitating over my post title, I want you to know that “finger work” does indeed apply to crafty-type things, not just to musical instrument type things – I was a little hesitant myself, but I needed an “f” word and, to my delight, some lady on Pinterest named an arts & crafts board “finger work” so thanks to random lady with not a shred of actual vocabulary authority, that was the end of that.  Bless the internet and our willing ability to find confirmation of anything we want confirmed.


This fall I’ve been having trouble with increased amounts of wooziness, fatigue and fogginess.  So any hopes I harbored for becoming a Chess Master or getting a PhD in Macroeconomics have dampened.  Which is fine, because those hopes were pretty much nonexistent, but what I would like would be to get out of the frickin’ house, substitute teach 2 days a week, and make some extra money.  In the mean time, I’ve turned to…crafts.  My 18 year old self in an ill-fitting power suit who looked down on women I thought were trapped in a domestic lifestyle would cringe.  Whatev.  I’ll take you on a tour of the nifty things I’ve been making.

It started with this Pinterest pin of how to make a wreath with your seasonally colored scraps of cloth:


I had a bunch of hand-me-down Christmas cloth and certainly had one of those annoying wire hangers, so this happened:


Then I used some small embroidery hoops to make little wreaths:


So then I moved on to this pin of a related craft,


So now I’m making a bathmat, which is time consuming idiot-work but is going to be SO soft and squishy on my bare feet. I’m using 5 different flannels, this rubbery mesh stuff sold by the yard in the fabric department, and this hook I had left over from a hair highlighting kit.  (If you’re not in the mood for blond highlights, I imagine a small crochet hook would work too.)

Now I know some very supportive people out there will say, “You could sell these!  You could make money!” and to this I reply, “No.”  That’s the whole point of it – I’m doing this because I’m very tired and a little muddled.  Deadlines and expectations aren’t working very well for me right now.  Plus the product is far from perfect.  If I was energized and clear-headed enough to be creating a flawless art, I’D BE AT WORK, where I want to be, making money and disciplining educating the young people of the great state of New Hampshire.  But I can’t, so I’m not, so I hope you enjoyed hearing about my bath mat.




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Screen Shot 2014-11-06 at 9.08.39 AMHave you checked out the new text on my home page?  It explains what the heck I mean by living “incurably.”  So if by chance you’ve been reading this little blog without knowing what the title of it actually meant, here’s a little intro explanation:

I’m a little fascinated with the dual meaning of the word, “Incurable”

Most people use the term to describe a disease or condition unable to be cured. A bad thing. But our good fortune is that it can ALSO be used to depict a person who won’t be changed by their negative circumstances. A person who is determined to thrive despite their limitations. A person living vibrantly and with gusto despite having a chronic illness. A very good thing.

There’s also a longer explanation in the intro of my little book.