Friday, January 6, 2012

Hello, World

I'm finally taking the plunge and making my own sewing blog, after years of voraciously reading the sewing blogs of others.  This blog will focus primarily on my own sewing (and designing and drafting) for clothing and costumes for myself, as well as the occasional gift or home-decor bit.  I'll try to keep non-sewing posts to a minimum, but by way of introduction, here's a bit about me and what you can expect from She Lies Shattered.

Both the blog name and the screenname I use throughout various points on the internet -- GlassCannon -- come from a poem I wrote in 2008:
She lies
Proverbial glass cannon

Fire smolders, smoke
She lies shattered.
The top definition for "glass cannon" on is "a person, weapon, or vehicle which has a high output, but a low defense, life, durability, etc."  The term comes from video games -- my background and occasional profession -- but I've found it describes me as a person fairly well.  In personality I'm feisty, opinionated, passionate, and creative, but physically I'm rather fragile and easily exhausted.

Eight years ago this week, I started experiencing pain and instability in my hip and knee joints.  In the decade leading up to that sudden onset, I had been diagnosed with two autoimmune diseases (Alopecia Areata and Hashimoto's Thyroiditis), but both had been diagnosed quickly and were fairly well under control.  But this was something new, and something that baffled the doctors.  Every day things like sitting or walking became painful, and my joints would give out for no reason.  Multiple Sclerosis was the first suspect, but when that was ruled out, my ever-growing army of doctors moved on to Rheumatoid Arthritis, then Lupus, FibromyalgiaAutoimmune Peripheral Neuropathy, Ankylosing Spondylitis -- the list went on and on, each new disease eventually ruled out.  I was put on opioid painkillers, shuffled from specialist to specialist, and did my best to minimize the symptoms by cleaning up my diet and the chemicals in my environment.  The latest theory is a genetic disease (as several of my siblings are now showing similar symptoms) called Ehlers-Danlos Syndrome, and one of my major goals for 2012 is convincing my doctors to look into it seriously.  But after living with this thing for eight years, I'm no closer to a diagnosis, and the disease continues to progress.

As of this month, my primary symptoms are still pain and instability in my knee and hip joints, but over the years it's spread to my other joints as well, particularly my shoulders, elbows, ankles, and fingers.  Sitting for too long causes my pain to spike up, but so does walking for too long, or standing still for even more than a few minutes.  I get exhausted easily as well, and so live my life by the spoon theory, rationing my energy and splitting up tasks that healthy people take for granted over the course of several days -- I can't shower and go grocery shopping in the same day, for instance.  From 2004 to late 2010 I structured my employment as a video game designer around telecommuting, contracting, and consulting, full-time when I felt up to it, part-time or not at all when my illness flared up.  In January 2011, I decided to take a sabbatical from the entire industry, and while I do miss it and the amazing people I got to work with, I don't miss the added stress and drain on my already meager energy supplies.

Leaving my video game job also allowed me more time to sew.  My mom taught me to sew when I was eight years old (so nearly 23 years ago now!), and I started getting more serious about it when I was in high school.  In addition to my body's illness-related weirdness, it's also weird when it comes to fit.  I'm 5'1", short-waisted, and wear a 28J bra size.  No dress has fit me off the rack since puberty, so in high school I started designing and sewing my own prom dresses.  I branched out from there to costumes and SCA garb, and in the last few years brought it full-circle and started sewing more daily-wear clothing as well.  I tend to sew mainly for myself and a few close family members.  I don't do commissions because of my illness, which doesn't respond well to deadlines, but I've tossed around the idea of selling finished pieces online eventually.

As my illness has progressed, I've started to use sewing as a coping mechanism.  In the past year, I've sewn several cushions and the like to make sitting at the computer or at the sewing machine less painful.  I've designed and sewn clothes that make me feel pretty, to help combat the depression that comes with living with a chronic painful illness.  And I sew as a creative outlet, to make something, finish it, produce it, and put it out there in the world, especially since I can't have kids and can't work.

And then this past fall, my illness decided it was time for a major wardrobe restructuring.  At first I couldn't wear jeans after a certain time of the afternoon, as the heavy material would irritate my hip and knee joints too much and spike my pain levels up earlier in the day than they otherwise would.  And then I couldn't wear jeans at all, no matter how early in the day it was or how loosely they were cut.  Trousers followed soon after, and then yoga pants, and most recently tights.

No jeans, no trousers, no yoga pants, no tights.  What exactly does that leave me to clothe my lower body?

It leaves skirts and dresses, thankfully!  In the last couple of years I've been gravitating more towards a retro aesthetic in my clothing and beauty routine -- vaguely late 1950s, early 60s, but nothing too strict or literal, and typically me-made, not actual vintage.  When I finally bought a petticoat in October 2011, I was thrilled to find that not only did it make my full skirts poof out in the cutest way, it also helped pad my hips from all the pain-inducing seating out there in the world.  I love pencil skirts and wiggle dresses too, but those are quickly becoming too painful to wear, sadly.

So that's me.  And this is my blog!  I've never really done the blogging thing before, so you'll have to bear with me as I find my sea-legs.  My hope for this blog is to document my sewing projects, especially from the perspective of using clothing design and sewing to cope with and accommodate chronic illness and disability.  I'd like to give back to the sewing blogger community that's so inspired and entertained me, and meet more bloggers with similar interests.

I'll try my best to update regularly, but as with everything in my life, my illness ultimately decides how much I can get done in a given day or week.  I'll post pictures of what I'm sewing and what I've finished, but they're likely to not be the beautiful full-outfit outdoor shots that I admire from other sewing blogs, at least not until I can convince my husband to take a few photos now and then, or until I can teach my cat how to work a camera.  And while I may post outfit photos from time to time, this definitely won't be an outfit-a-day blog, as most days I live in jersey skirts and fluffy socks and don't leave the house, lol.

This post is also the most I'll talk about my illness, in all likelihood.  It's a huge part of my every day life, so I'll make mention of it with regards to sewing clothing that helps accommodate my pain, but this won't be a health or chronic illness blog.  I'm not looking for suggestions on what new disease to research, either -- not only have I been through a list of potential diagnoses several miles long, but I try to limit the amount of time and energy I spend thinking about and stressing about a question that two dozen plus doctors haven't been able to figure out.  I want this blog to be about sewing with disability and chronic pain, not about reenacting the longest episode of "House" ever.  And even if/when I finally get a diagnosis, it won't suddenly stop my need for cute, non-pain-inducing clothing.

That said, I would love to meet other sewists living with chronic illness, so please drop me a comment if that's you!  And other bloggers into retro fashion and beauty, costumers and cosplayers (especially if you go to DragonCon!), knitters, gamers, geeks, designers, and everyone in between.  Comment here to say hi, or add me over on Twitter.  I'm looking forward to meeting all of you, and sharing 2012 with you.

Next up: what I sewed in 2011 -- coming soon!

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