Tuesday, April 26, 2016

Insomnia Post #23

Prednisone Insomnia is kicking my ass tonight.

I've been up for about 40 hours straight so far and my attempt at an afternoon nap was a failure.  DRAG.

I took pain meds and I'm drinking some herbal mint tea and trying my best to wind down...

So, the current Listography:

Reading: The Queen of the Tearling 
I am in a fantasy novel kind of mood, probably because Game of Thrones is back and I'm pretty stoked about that shit.  I need the magic necklace the Red Woman (Melisandre) wears because, DAMN. That final image from the Season 6 Premiere really stays with you.

Watching: Game of Thrones, obvi
I  binge-watched Season 5 of Lost Girl in about three days.  It's a guilty pleasure and I'm not sorry. I also just put myself through Still Alice and I realized that's why I don't watch these kind of movies and stick to Sci Fi and Fantasy instead.  I can't handle anything REAL.  My father has Alzheimer's and it's a horrible, devastating disease and this movie made me sit on my couch and cry like an idiot.

Cooking: trying to maintain my nutritional status has been a struggle with my Gastroparesis.  I'm still losing weight.  I've lost nearly 50 pounds since the onset of GP.  It's weird.  I did finally make that tortellini soup with spinach last weekend and tolerated it okay, so long as the portion is small. I don't seem to have a problem with wheat or gluten, surprisingly.  I do seem to have a problem with dairy so I am looking at non-dairy alternatives and collecting some Vegan recipes to try.  I am looking for a good basic Vegan cookbook for beginners.  Not sure where to begin...There's so much out there!

I feel like I should be doing AIP (autoimmune protocol diet), but so much of the protocol isn't suitable for someone with GP.  Too much meat, fat, fiber.  Very hard to digest.

Writing: Working on a tarot poem for a larger project and I am struggling with it.  I need a full day set aside for doing creative work but it's been super hectic.

Walking: reasonably well, actually.  I have been able to put my cane away for now, thanks to these damn steroids. While it's not ideal I am grateful for the significant improvement.


Monday, April 18, 2016

To the Person Who Envies my Illness Because It Made Me Thin:

I am sorry we live in a world that makes you want to be sick, just so you can be thin.  I am sorry you are made to apologize for your health and appetite, to wish such a gift away.  I've lost count of how many people (mostly women, but a couple of men too) have said: I wish I had what you have.  I wish I had Gastroparesis upon noticing my significant weight loss. All I can say is don't wish for this, don't even think it even though you don't believe me.  You don't want to be in pain every day.  You don't want the persistent nausea, the vomiting, the bloating and distention and fear of what will happen when you eat something. You don't want to hear about the limited and uncomfortable treatments available: about botox shots in the stomach, about gastric pacemakers and J-tubes.  You don't want to take medicine that puts you at risk for permanent neurological damage just to make your stomach work.

What you don't understand is that my Gastroparesis is likely due to my malfunctioning immune system.  I have Lupus and Hashimoto's and Inflammatory Polyarthritis.  There are days (and weeks, and months) when I cannot walk.  I get synovitis that locks my joints.  I get stress fractures. There are days I am so fatigued I can barely hold myself upright. This same disease that led to a nearly 50 pound weight loss is just as likely to cause me to gain it all back, and maybe more.  A year ago, I was overweight, borderline obese.  Months of immobility and steroid treatments caused me to gain weight. My face swelled up until I was nearly unrecognizable as the person I had come to know in the mirror.  This isn't something I can control, living in an unruly body.

I know your intentions are good.  I know you mean it as a compliment.  Try to understand why it isn't flattering to be told that sickness looks great on you.  Try to understand why it makes me overwhelmingly sad to hear that you want to be sick, too.  Our culture is sick.  It's sick to make people hate their healthy functioning bodies because we privilege thinness above all else.  Know that maybe you are a size 10 or a 14 or whatever and that you are gorgeous in your strength and your vigor.  Know that what you have is far more enviable than illness.   Know that I am not angry with you, merely sad that you cannot see the entire narrative, that your view is obscured by what you don't understand.


Tuesday, April 12, 2016

Ever feel like you are a total weirdo and nobody understands you?

Me neither.


Still suffering from prednisone insomnia so I spent last night curled up on my complex pillow configuration watching horror movies on my tablet and I watched an Irish movie set in a rural wood full of evil fairies that steal babies and turn you into some kind of demon tree thing if they scratch you and this dude got stabbed in the eye by a banshee or whatever and then he had a creepy almost cyborgian devil eye and it made my eyes water.  Oh, (spoiler alert!) there's a scene where a fairy changeling baby sort of explodes at the end, too.  I don't know why I think this kind of thing will help me sleep but I never claimed to be completely logical.


I felt pretty good yesterday and had very little pain and could walk almost normally and whenever I have a day like that I think oh, maybe this is over and I am fine now but of course that is kind of naive and then I overdo it and work a 9 1/2 hour day and come home and clean up the house a bit and make dinner and then I'm all like oh, now I am hurting and cannot get comfortable and I remember that my body has limits even on its best days.


I am being a total psycho about my weight which has creeped up by a pound and a half in the last few days due to steroid treatments and while I know I've lost a huge amount of weight due to gastroparesis I still worry about gaining it back even though it would be okay it feels terrifying because after 8 months of *PREDNISONE* I was borderline obese and don't want to deal with that even though I lost so much from being ill and it's just completely dysfunctional.


Today is a designated writing day!  So, tea & poems.


Reading: Let's Pretend This Never Happened by Jenny Lawson. There's a chapter about working in HR that made me die. It's totally snort-worthy.

Watching: Random Horror Movies.  See above.

Cooking: Today There Will Be Soup. I am thinking perhaps tomato soup with tortellini and spinach. This may or may not happen.

Burying: the bodies, but only fictional ones.

-SJS out-

Sunday, April 10, 2016

Fairy Tales for Grown-Ups part XII

Once upon a time in the darkling forest there was a lonely witch who was quite given to dressing in pastel colors and had lavender hair.  She grew lively talking Crocuses and Narcissi although they often shunned her because she was not beautiful.  Instead, she grew a prickly cactus in a terra cotta pot on the kitchen windowsill but the cactus flowered and thought herself too beautiful to associate with the witch, so the witch gave up gardening altogether and conjured something dark and unpleasant in hopes it would keep her company.  The spirit often hid among the bookshelves and erased spells from her grimoire.  It was not unlike having a cat, for it hid and caused mischief and only wanted to be fed, preferably with wrens from the garden or the occasional field mouse.  She left out cartons of cream for it but they curdled and turned foul.  Finally, the witch gave up and joined social media, posting pictures of her coarse grainy homemade breads on Instagram and using the hashtag #witchlyfe.

The End.

Monday, April 4, 2016

Random Update

This is an I-don't want-to kind of week so I am making a list of things that make me happy:

hot baths, crime dramas, pajamas, warm days with the windows open, ballet slippers, swirly dresses, hot tea with honey and lemon, mystery novels, clean laundry, the scent of lavender, hot soup in a delicate teacup, clean floors, soft fuzzy blankets, lamplight, tiny houses, movie nights, red lipstick, tarot cards, blue-painted rooms, strawberry milkshakes, naps, road trips, winter coats with fur collars, snow days, thunderstorms, herb gardens, vintage cars, lhasa apso puppies, celebrity internet memes, hyacinths, white roses, science fiction & fantasy, novelty socks, candied ginger, antique jewelry, the scent of popcorn, jeans that fit, flannel shirts, framed photographs, stained glass, arched doorways, train rides, days off, vanilla cupcakes.

Reading: The Forgotten Girls

Watching: (looking for the next binge worthy obsession)

Cooking: I made risotto last night! It was basically an easy version baked in a covered dish in the oven instead of standing and stirring but it turned out great! Cooking is a huge struggle these days due to both my inability to digest much and my ongoing chronic pain and fatigue, so when I make something everybody in the house is so incredibly happy.  I like making people happy.

Other Stuff: Impromptu trip to the Rheumatologist last week due to increased difficulty walking and bearing weight on my right leg.  Had my knee drained for the umpteenth time and got a lidocaine shot.  Felt like hell when it wore off.  Back on crazy pills aka prednisone so UGH. Hoping it helps while dreading the return of my super gross puffy steroid face.  Still struggling to get adequate nutrition due to gastroparesis--having lost another 8 pounds or so in the last three weeks.  Force fed myself a smoothie this morning and now I feel overfull and bloated and barfy.

Writing: I have a few things I am working on but it is slow going when I am not feeling well, which is pretty much all the time now.  Planning on doing a bit of writing today.

Working: even part-time still wipes me the fuck out. Can't figure out how I was managing all those hours last year in this jacked-up meatsuit.

Tuesday, March 22, 2016


Hello from the Underworld.

Let's talk about mobility and perception.  If you know me personally, you probably know I've had difficulty walking for quite some time now.  I have synovitis in my right leg due to Lupus and it has lost both strength and flexibility that I cannot seem to regain.  My right knee is very stiff and fills up with fluid (it's been drained numerous times by both orthopedists and my rheumatologist).  Some days, it can hardly bend at all.  I've been through a long stretch of PT that seemed to help temporarily, only to be followed by yet another flare up, despite a decrease in overall systemic inflammation. It's a drag.

So I finally got a walking cane, as pictured above with the lovely silver scrollwork design, because GLAMOUR, baby.

Does it help?  Most definitely.  It takes the weight and pressure off my janky leg and helps me walk with less pain.

Do I use it often?  Eh.... I feel too self-conscious to take it to work.  I use it to get around when I go out sometimes, especially if I will be doing a fair amount of walking.  It helps me get around the house on a bad pain day, too.  But work, where I probably need it the most?  So awkward.  I don't want to be perceived as too "impaired" for my job, for which I already have restrictions.  So I limp and wobble around and suffer, which I know is dumb.

I've been on my feet (on and off) for six days in a row, five of them work days and I'm in a significant amount of pain.  My body can't manage the levels of activity I'm trying to squeeeeeeeeze out of it.

I'm trying to talk myself into taking it to work if I need it.  My cane even folds up and fits in a carry bag. But I know I'm going to get a shitstorm of unwanted interactions and questions and I just don't want to deal with the excessive interest I'm likely to get from co-workers, many of whom already comment almost daily on my gait or how I look, etc... Or what's worse, the looks of pity, which are totally gross.  I mean sure, it sucks...but don't look at me like I make you sad.  UGH.

Ultimately, I need to do what's best for me and my health.  Still, I just don't want to deal with the perception of being sick, being damaged.  But my body isn't giving me much of a choice sometimes.  It's getting incredibly hard to walk and with each active day it gets just a bit harder.


Currently seeking: the mindset to do what needs to be done and take the damn walking cane to work with me.

Currently watching: Person of Interest (obsessed!) and Banshee (intrigued.)

Currently reading: The Magicians Land by Lev Grossman

Current culinary obsession: more often than not I drink milkshakes for dinner because Gastroparesis sucks.

Friday, March 11, 2016

Bodies / Public

I have always been interested in the perception of our bodies as public spaces, vulnerable to the gaze of others, where people construct a narrative that objectifies.  Other people are forever trying to tell us who we are based on how we appear to them. We may have been raised to be polite, not to pry into private lives, but we are forever evaluating and commenting upon the bodies of others: their gender, weight, general appearance. No permission needed.  This is especially true for women, but we do it to everyone.

There is nothing quite like the struggle with illness or chronic pain to make this visible.

Coworkers, relatives, even strangers feel comfortable commenting upon my body.

It's been a little less than two years since I developed some visible mobility problems, specifically, an awkward gait with a somewhat pronounced limp due to recurring problems with rheumatic disease. I've had people I barely know ask:

"What's wrong with you, anyway?"
"What's wrong with your leg?"
"Do you have XYZ condition?"
"Are you always going to be like this?"
"Are you EVER going to get better?"

Even more disconcerting are comments on whether or not you "look" sick.  I've had coworkers tell me things like "You looked so unhealthy a few months ago, but look much better now."  The intent is to be kind, but it seems so presumptive, this feeling that one is free to comment on how you look without being asked.

Much has been written about invisible illness, about feeling as though your experience is being dismissed because "you look so good."

But there is so much you don't see behind closed doors:
the days spent in pajamas because I am in too much pain to get dressed,
the overflowing shelves of prescription medications,
the ice packs and heating pads and long, painful physical therapy sessions.

I could go on and on, but you get the idea.

I have to live my life. I take painkillers.  I wear makeup and style my hair and go out anyway, at least sometimes.  Inevitably even those closest to me, like my my mother or mother-in-law, will then greet me with "Well, you certainly don't LOOK sick."

Hey, I didn't ask.

It gets old.

It's interesting to me because much of what I write deals the external narratives thrust upon us, our bodies. Sick bodies, female bodies are especially vulnerable. We aren't granted the agency to write our own stories.  Our bodies are public spaces filled with the graffiti of external perceptions. It feels like vandalism, a violation. This is definitely a theme in CYBORGIA, as well as in more recent work.

This is the value of writing, in whatever form you choose: a poem, a novel, a blog entry.  It's the opportunity to write your own story, to retrieve the power to construct the narrative being written on your body.