Saturday, June 18, 2016

Block, writerly and otherwise.

I don't know if anyone else has had such a long hiatus from writing regularly as I have, but it is so much harder to be creative once you are out of the habit.  I have enough time to make this a part of the daily ritual, but sometimes the energy is just lacking.  I am trying to read more for inspiration, and watch less television (which is, admittedly, my downfall).

I did write a small piece today, although I am not crazy about it.  Now to let it rest for a day or two and go back to revise.

The house is quiet today. Everyone is out doing their thing and I was feeling the usual trifecta of pain, nausea and fatigue this morning so I took a pass on being out and about.  Ninety degree weather doesn't help much, and a day in the sun is really just asking for a flare up.  My leg is already stiffening up because we are tapering off prednisone again.  It's like flipping a damn switch.  I've already lost significant range of motion.  It's a bummer.

Reading: City of Dark Magic and The Sisters Brothers

Yes, I often read more than one book at the same time.

Watching: I just finished Slasher on Netflix.

Otherwise, life remains as ordinary as ever.

Sunday, June 12, 2016

Healthier Days!

I can't believe it's been a month since I've posted here, but it has been a pretty good month, at that.

The best thing is there has been significant improvement in my GI symptoms and I am keeping down small meals of solid food, which is amazing!  I am by no means totally normal in terms of my digestive tract function but it's nice to be eating more normally. I still have gastroparesis but it seems to have quieted in intensity and as long as I am careful, I can have days free of nausea and vomiting and still eat solid food.   I've even added a few foods back into my diet (albeit in moderation).  Hopefully this will continue. I even gained two pounds! I think we can stop talking about the possibility of needing a J-tube, which I really, really did not want to do.  If I can continue to manage with a modified diet, I'm in good shape.

Y'all know how I love to eat.

I am also tapering off Prednisone, so we'll see how that goes.  My leg with probably swell up like a mofo again.

I've read a whole bunch of books in the last month.  I just finished the third book in the Passage Trilogy, City of Mirrors. In some ways, the series reminds me a bit of Stephen King's The Stand. 

It's more about the apocalypse than vampires, really.  I buzzed through it in a couple of days.

I am feeling kind of blue about all the things I used to do, but I'll power through it.  Sometimes I feel shitty about working part-time.  I know I feel *physically* better now that I have prioritized balancing work and rest, but we live in a work-till-you-drop-even-if-it-fucking-kills-you culture and there's some guilt I'm dealing with, honestly.  My house isn't really up to my standards, either.  I start cleaning and then I get exhausted and shaky and I have to stop and rest, which is totally lame.  It took me three tries to wash a load of dishes the other day.  Getting better is such a long, hard road.  

I think it's been hard to write due to this lingering depression.  The drive to work on creative projects just isn't there anymore.  Mostly, I want to mentally check out by reading or watching movies instead of making art.  Not quite sure how to turn it around.  I think getting involved with a writing group might help.  It would sort of force me to have things done by a deadline and also I really need to reconnect with the writing community.

#chroniclife, am I right?!?





Friday, May 13, 2016

footnotes on a good week

1. Feeling relatively good today, which is hard to trust as I am always waiting for the inevitable onset of feeling like hot crap.  Still, it's nice to feel functional and make it through a work day without wanting to fall over.

2. I binge-watched Penny Dreadful in three days (sorry not sorry) and have decided there are not enough cowboy-werewolves in horror narratives.  

3. Reading A Head Full of Ghosts and I am burning through my book queue way too fast for my own comfort.  

4. I ate pizza tonight and I did not die or puke, which is pretty awesome.






Who reads this randomness, anyway?  I feel like I am shouting into an electronic void. Talking to myself is like a mad skill though.

Friday, May 6, 2016

On the Power of #Selfies



Confession: I am 44 years old and I take selfies.

I see it as a way to document those things that change day to day, to remember what I was doing, thinking or feeling when I took the photograph. For all the mocking women endure for taking and posting self-portraits, it can be a powerful artistic medium.  I use these images to capture my moments of illness, my good days, myself in a moment of time that is elusive and slippery, to hang on to something in a permanent way.  I look back at where I've been and reflect on where I'm headed.

Sometimes I use Instagram filters, but I'm not uncomfortable with my flaws.

I'm okay with the changes brought by time, the signs etched in my skin.

I appreciate the portraits posted by friends on social media sites, like Facebook or Instagram.  I see it as a kind of empowerment, to choose and curate the images we share, to write our visual identities rather than have them written by some external force.  If we want to see images of women that show strength and beauty at all ages and sizes we have to wrest that power from conventional mass media ourselves and selfies are one of many ways we can do that.

If painting a self portrait is an accepted art form, why not this?



Listography:

Reading: Just finished The Queen of The Tearling ^^
I like the way Kelsea (the heroine) is written.  Not all princesses are conventionally beautiful, and princesses grow up to be badass queens.  If you like YA fantasy (and oh, I do!), it's worth a read.
Today I started on The Night Sister: I'm loving this one so far, probably because I'm a sucker for crumbling Gothic decay and suspense and murder.

Watching: I'm all caught up on The Blacklist and I think Penny Dreadful is my next attempt at binge watching, because MONSTERS.

Cooking: I'm thinking a pot of Carrot-Ginger Soup should be up next.  The recipe I found uses coconut milk and sounds amazing.  I recently had a version of this while visiting my parents in Assisted Living and it was surprisingly good!  I'm certain my version will work well and also be dairy free and tummy friendly! Also, I'm going to juice the bejeezus out of some fruits and vegetables this weekend.  Cantaloupe-Cucumber and Pineapple-Carrot juices are in the works.

Writing: Still beating my brains out on this one piece that I'm just not happy with...I think I should set it aside and do some freewriting for a while.  (Spellcheck just tried to change "freewriting" into "ferreting.") Heh.


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.

-SJS-

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-