Friday, August 19, 2016

August is almost over and it smells like fall and rain already.

I am moving through life as quietly as possible, under trying circumstances.  Both of my parents have dementia and are now in a Memory Care Facility, which has been very, very stressful. I am trying to make peace with all that comes along with such things.  It's not easy.

It throws the whole family dynamic into such an uproar.  Feels chaotic and sad and overwhelming, to say the least.  It makes the future seem incredibly bleak.


I had my first loading dose of Benlysta this week, as well as my first Reclast infusion.  This went well, with no major side effects other than drop-dead exhaustion lasting about two days.  I do have some monster joint pain happening, with my leg flaring up, as well as intense shoulder pain and a stiff achy jaw that makes trying to chew rather unpleasant.  I don't think this is related to the infusion.  Probably just Rheumatic-Disease-Business-As-Usual.   I am hopeful this will be the right treatment for me, but it will take several months to see if this is going to work.  I dream of getting off Prednisone!  Time will tell.

Gastroparesis symptoms are flaring up again, unfortunately.  Had a cup of ginger tea for breakfast and
I plan on getting my juicer going today.  I think I need a couple of days back on the liquid diet to get my guts to calm the fuck down.  I love food, but it doesn't love me back. Alas.

I am still learning how to live in a body that doesn't work quite right.


I am re-watching Game of Thrones from the beginning because I find comfort in the familiarity of revisiting my favorite shows.


With the recent turn in the weather I feel like cooking, but my stomach is being a jerk.  I think this calls for soup.

Tuesday, July 26, 2016

Fairy Tales for Grown-Ups

Remember a time when you were a seal? Something slippery and mythical always signifies a dangerous woman. Or perhaps we are simply lost, looking for Iceland or Atlantis or those places on maps that are plagued with  sea monsters.  Tell me a story about when I was born.  Tell me I am secret royalty, the lost princess with a power for telepathy and a scepter that holds multiple futures in its glass finial, the prophesies of rubies and magic and a storm of frogs and stones.  Where is the happily-ever-after hidden?  Will we find it buried under long dead oaks or boulders embedded with swords and snakes?  I am the heroine of this story but I am also the villainess.

Thursday, July 14, 2016

Random Update

How does time pass so quickly? Summer is just rolling by...

Prednisone taper was a complete fail.  Within two weeks I could not stand to put weight on my leg and had broken out in a wicked rash.  So, I am stuck on steroids, for now.  Drag.  More medication changes ahead!  Still working out some details, but I am hopeful that we will find a treatment that works without destroying my bones in the process.

I just finished reading All The Birds in the Sky by Charlie Jane Anders, which I really enjoyed, because there are witches and talking animals and an Artificial Intelligence, so hell yeah.

I also re-read The Alienist because I have been in the mood to revisit things an I am now kind of obsessed with the time period because I just re-watched all three seasons of Penny Dreadful, which is so unbelievably good.

Also: my house is overrun with centipedes.  I'm certain this is a troubling omen.

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?


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.