This has been such a hard week for so many of us.

I too, am heartsick.

I want everyone to be safe in their bodies, in their skin.

I want all relationships to be held sacred.

I want everyone to have access to adequate and affordable health care.

I want economic justice for all.

I want to believe this is possible.

I believe we can still wake up every day and fight for a better world, to protect the most vulnerable among us.  It matters now more than ever.

OVER IT

Greetings from the Underworld.

I'm tired.  Tired of being exhausted.  Tired of hurting.  Tired of thinning hair, of my kitchen counter overflowing with meds, of rashy skin, of swollen joints, of chest pain, of lungs that feel like there's a brick sitting at the bottom of each of them.

Seriously, I'm OVER IT.

The unpredictable nature of autoimmune diseases is a major drag.  It's the back and forth of it.  One day, you feel sort of okay.  You're functional.

(Of course, my definition of functional is pretty loose.  If I go to work AND cook dinner I feel like a fucking badass. ) 

And then you wake up and can't get off the couch for more than ten minutes without feeling like you're going to fall down.

(I did NOTHING today.  Like ZIP.  I wanted to, but I could barely fucking move.)  

***

Things are chaotic at work and I have to put in some extra hours due to a staffing situation and I have mixed feelings about it.  But I'll push through it, like always.  I wish I had more time to work on some writing projects.  I feel like I'm finally getting back on track with my next batch of poems, but it's still going more slowly than I would like.

Benlysta treatment #5 is this week!  Things are far from perfect, but I do see a difference.  It's definitely been the most effective thing we've tried so far.

Not binge-watching anything particularly awesome, just random crap.

In my dream life I write every day and cook beautiful things like risotto and red velvet cupcakes and my hair always looks good.

It's My Leg-O-Versary!

Two years ago today my leg blew up to three times the normal size and it locked up in a straightened out position and I ended up in the ER with a monster elephant leg and they sent me home with an immobilizer and a shrug and some crutches and I didn't walk or drive or work for the next four months while bouncing back and forth between Orthopedists and Rheumatologists.  My leg still sucks every day but I am working and driving and walking without a cane so that's cool.

Happy Leg-O-Versary to me.

Random Things

Trying to get a few new poems or hybrid pieces written, but I have been a SLOW WRITER these days.  Too much going on and my mind is everywhere: thinking about the cruelties of time and old age and poor health and about getting my messy-ass house in order and what to cook that I can eat without GI symptoms and getting to all the doctor's appointments and going to work and still having fun and getting enough sleep and maybe baking some bread.

I have been looking over old blog entries and I realized that I am doing so much better than I was it's just that it happened so slowly... I am walking better and keeping food down and breathing okay so I am pretty good, yes?  Each day is different and unpredictable as yesterday I felt like I could hardly stand up and needed to lay down for a couple of hours after my shower because I was so exhausted and I didn't have the energy to dry my hair or do anything but today I feel okay.  So weird.

This week I made some pumpkin muffins topped with coarse sugar (autumnal!) and I made a big pan of stuffed pasta shells for my guys because they both work lots of nights and come home hungry and those reheat beautifully and now I would like to bake some cookies and make a fresh pot of soup.

I can (happily!) eat a muffin with no issues.  Yay, muffins!

I have even managed to cut back on the reflux meds which are correlated with all kinds of health problems like heart disease and kidney disease and dementia which is terrifying.

I am watching season 5 of Person of Interest and this show is so brilliant why doesn't anybody I know watch this one??!?

I have this dream life where I live in an isolated farm house and I keep chickens and I don't have to work retail and life is super peaceful and I read lots of books.  In this dream life I write books and of course I could write books in my real life but one still has to have a regular job because writing books  doesn't really pay all your bills but OH what a lovely idea.

Everyone at work is sick and at least two of my bosses have walking pnuemonia and I am thinking about finally buying a filter mask and wearing it to work even if it makes me look batshit insane because seriously, guys?!?

Nobody stays home when they are sick instead they choose to be patient zero and infect us all and bring on the zombie apocalypse.  

messes and whatnot

Fourth Benlysta treatment completed on Tuesday! So, I had a very sweet young nurse do my IV and it was a bloody mess.  Blood was pouring out onto the tray and filling up the the IV and making a mess under the see-through bandage so she covered it with opaque band-aids and we both pretended it wasn't horrible.

She kept wiping it up saying: "Don't look.  Don't look!"  It's funnier now that it's over.

Good times.

I ordered another dress with monsters on it because I have no self-control.

This week's soup was Sweet Potato Bisque with Ginger!  I make a mean soup.

This week's insomnia binge-watch: Season 2 of iZombie.

Going to try and taper off Prednisone again. I am hoping it goes MUCH BETTER now that I have been on Benlysta for a couple of months.  So, so ready to be rid of my puffy face, etc.

message in a ginger ale bottle

Spending the day curled up with a mystery novel.  Too tired to move, yet I feel restless.  Working a 4 a.m. shift tomorrow (*dies*) followed by yet another doctor's appointment followed by an afternoon at the Infusion Center.  I'd like to sleep for a month.  Please send gingerbread and a heated blanket.

xo

bad days, darklings

Monster flare up this week.  Shaky, exhausted and in a significant amount of pain.  Ugh.

Maybe the stress of moving my mom and dad triggered it?

Taking a self-care day.  I made a pot of fancy Irish Breakfast Tea and good toast with honey and I painted my toes a super goth shade of dark purple even though my hands are way too unsteady and I had to wipe off all the smears with 4 Q-tips.  Thank the holy dog it's not a work day because I would be useless.

Reading Elizabeth George's A Banquet of Consequences which has a Terrible Title but so far the book is quite good.

Current Mood: 

Flare days and life, such as it is

After a couple of weeks of feeling pretty good, this last week has been kind of rough.  Lots of joint pain and GI symptoms.  Feeling exhausted and short of breath again today.  Alas!  I was beginning to hope this would be a thing of the past, but that was unrealistic.

I pushed through today.  Made it to work and made it through the day but it was such a relief to get home and rest!  I wanted to do some writing, but I don't think I'm feeling it.

I have my fourth Benlysta infusion next week. Maybe this will get me back on track?

We're moving my parents to a closer facility and I am hopeful that I will be better able to keep an eye on things.  It's stressful though.  Perhaps the combination of that and the bad weather are kicking my ass this week.

Spent last weekend in Wisconsin with my guys, which was lovely.  I did have a tough time with not feeling well but I still enjoyed myself and it's always good to be with my family, even if I can't quite keep up.  I found a little tea shop on a rainy day and bought some loose leaf tea and a new infuser mug in bright red which makes me super-happy!

Reading: Just finished Joe Hill's The Fireman because I love a good plague/apocalypse.

Watching: Season 5 of Person of Interest, American Horror Story Season 6: Roanoke.  I also checked out the pilot episode of Westworld on HBO.

Cooking: Not so much.  Meh. I was on a bread baking kick earlier though.  I made a pretty nice vegan sandwich bread with oatmeal and brown sugar.   And baguettes! I might get back to my happy baking once I'm feeling a bit more energetic.

Dreaming: I dreamt I was at a poetry reading and a fight broke out between a gorilla and a chimpanzee.  That is all.

Fairy tales for Grown Ups

Once there was a woman who was really a crow, or perhaps a jackdaw.  She knew where you hid your gold rings, your freshly baked bread.  Darkling, darling, darkwing.  On bad days, she was all beak: sharp and full of worms.  What of avian games?  The balancing of sticks and sliding down on slick branches?  If she lost all her blue-black feathers, would she be trapped in human form? Her bones remain, simultaneously hollow and heavy.  There is a story hidden in her joints and tendons, one of flight and lodestone and shiny red berries.

 She will never be content to carry your messages.

Vignette

There is a certain scent to these places: warm juice, overheated rooms, baby powder and urine.  I often see a woman--her back perfectly straight, her gait surprisingly solid, just a hint of shuffle. She carries a baby doll. She diapers and changes it in the corners of the hallways, on the tables and bookshelves.  Sometimes she asks for help but cannot explain what kind of help she might need. There aren't very many men here.  My dad is one the few.  He is still tall and handsome at 76, but mildly disheveled.  He often looks just a little bit lost.  He used to love to dress for things: he had tartan vests, J. Peterman shirts, white wing tip shoes.  Now he wears only athletic pants and t-shirts.  They don't always match.

"It's good to see you," he will say.  Or sometimes (when I bring my husband) "look at all the people."

He is afraid of mirrors.  He believes there lurks within them an imposter.  A man who looks like him, who follows him everywhere and steals his shoes.

Once he took off his shoe and tried to beat his reflection with it, leaving herringbone track marks on the glass.  He throws rabbit punches at his image, saying "I hate that guy."

My mother is hunched, her head parallel to the floor, circling the hallways with her walker.  Muttering to herself that she's going to die.  She's wearing a black blouse with tiny white pin-dots, black pants, clunky black maryjanes.  It's hard to get used to, seeing her like this, her mind a flock of ravens, shattering into diaspora.

"They leave me pictures of amputated fingers," she tells me.

"Who?" I ask.

"The STAFF!"

"I'm pretty sure that's not happening." I tell her.

"Your father believes me." she says.

She has Parkinson's Disease, with psychosis and hallucinations.

I see myself, or perhaps my sister, 30 years from now.  We all have the same auburn hair, fair complexions, delicate bones, although their eyes are blue, and mine are hazel.  I ask my sister: will we shrink like those folk dolls, made from dried apples?  Will we cling so desperately to who we were that we can't be trusted on our own, believing we can drive our cars while blind, manage the bills and the checkbook when we can't remember what they mean? Will our minds change in some fundamental way, lewy bodies, amyloid plaques, the broken synapses a foregone conclusion, written in our genome, a countdown clock, ticking away?

Sometimes I picture them when they were younger: Dad cooking a Thanksgiving turkey, Mom with her hair set in giant rollers to straighten it.  They used to have cocktail parties, play bridge.  They traveled to Europe, twice.  My dad used to mow the lawn every week, until he began to believe he kept breaking the lawn mowers because he couldn't remember how they worked.  We found four fully functioning mowers in the garage when we cleaned out their house.

We found a drawer full of fingernail clippings.

We found over a thousand twist ties--the green ones you get in the produce department at the supermarket--stashed all over the house.

We found cereal in the freezer.

We found bugs in the pantry and poison ivy all over the yard.

We found ourselves completely unprepared for this.

I spend most of today drinking gunpowder green tea and reading Louise Erdrich.

99 Things

I Love:

99. loose leaf tea

98. thunderstorms

97. swing dresses

96. heated blankets

95. covered porches

94. lemonade

93. bunnies

92. blue and white china

91. horror movies

90. red velvet cupcakes

89. silly cat memes

88. coloring books and colored pencils

87. red lipstick

86. evening walks

85. hot baths

84. lemon meringue pie

83. unexpected gifts

82. romantic dinner dates

81. vintage cars

80. brand new notebooks and journals to write in

79. backyard cookouts

78. christmas lights

77. striped pajamas

76. novelty t-shirts

75. anything plaid

74. comfortable silences

73. days off

72. sleeping in

71. diner breakfasts

70. solitude

69. reading poetry

68. writing poetry

67. going to the theater

66. Alfred Hitchcock movies

65. clean bathrooms

64. making soup

63. fireflies

62. snowfall

61. science fiction

60. clean, folded laundry

59. lamplight

58. reading all day

57. dark chocolate

56. cara cara oranges

55. tarot cards

54. antique furniture

53. tiny houses

52. semi precious stones

51. teapots

50. birthdays

49. spaghetti dinners

48. good hair days

47. lavender scented skin creme

46. eyeliner

45. chai

44. old photographs

43. Nicolas Cage movies

42. getting packages in the mail

41. beautiful hats

40. airstream travel trailers

39. road trips

38. comfy reading chairs

37. mint green

36. old lockets

35. jeans that fit

34. flannel shirts

33. hibiscus flowers

32. swimming

31. porch sitting

30. caramel sundaes

29. hotel rooms

28. buttered noodles

27. museums

26. libraries

25. candles

24. Thanksgiving dinner

23. brand new sheets

22. stained glass

21. footed cake plates

20. the scent of vanilla

19. original artwork

18. brand new pens

17. roasted pears

16. lots of pillows

15. mystery novels

14. rocking chairs

13. 90's dance party!

12. robots

11. tall stacks of unread books

10. gingerbread

9. opals

8. cat's eye glasses

7. cardigan sweaters

6. old maps with sea monsters lurking in the oceans

5. afternoon naps

4. depression glass

3. skirts with pockets

2. messy updos

1. chocolate chip cookies topped with coarse salt

*VENT*

Sometimes I get really mad about my malfunctioning stomach though.  I tried to eat some "regular" food (2 chicken strips) this weekend and made myself super-sick and miserable, so it's back to soup and tea and whatnot.  I know I am lucky I can still take nutrition by mouth.  I'm lucky I've avoided needing a feeding tube for gastroparesis.  But.......it still pisses me off.  I LOVE food.  I want coffee.  I want cocktails.  I want to eat steak and fried chicken and bacon cheeseburgers.  But, WHATEVER. Anyway, I am online window shopping for fancy loose-leaf teas, which is something I can still tolerate.

*end tantrum*

I have my second Benlysta infusion today.  The first one went just fine.  No reaction, other than being extremely exhausted afterwards.  I started the Reclast infusions as well.  So far, no issues.

Still working a couple of super-early 4 a.m shift mornings every week, which makes me want to die.

I am hopeful for better days.

***

Writing: I am revising a few poems, having met with my writing/poetry group about a week ago.  I am thinking about going back to some essay and short fiction writing as well.  I miss it.

Cooking: August is drawing to a close!  You know what this means, right?  It's SOUP SEASON, motherfuckers.  Tortilla soup.  Sweet potato soup with leeks.  Vegetable orzo soup with lemon.  Creamy tomato soup with basil and garlic toast.  Take that, broken stomach!

Watching:  All the Nicolas Cage movies. Don't judge me too harshly, as watching my man Nic over-act is the best stress relief ever. Is he missing a tooth in Moonstruck? Also: that wooden hand, heh.

I am still re-watching Game of Thrones.  And searching Netflix for movies that might have dragons in them, because DRAGONS, amiright?

Reading:  I am in the mood to revisit old favorites.  I am re-reading Alias Grace by Margaret Atwood.  I might also re-read The Mists of Avalon, which is my favorite book, ever.

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.

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.

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.

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.

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?!?

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.

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.

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.

***

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-

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-

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.

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.

Dreamwalking

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.

Listography:

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.

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.

Writing and the Investment of Time and Energy

When you have a limited amount of energy to spend (as I do) you must choose carefully which tasks to prioritize.

I have been thinking about this quite a bit lately, as I have not spent much time and energy on writing, at least not as much as I would like.  Instead, it has been primarily work and sleep, with any extra strength spent on domestic tasks, such as laundry, food prep, and paying bills.

I have written a few poems throughout this long period of chronic illness, but not with the productivity of just a few years ago.  I miss the days spent this way: a hot cup of chai, a pile of books, notebook, laptop.  The process of completing a bigger project--such a a full manuscript--is really satisfying: the research, writing, assembly, editing, submitting.

It's been a while.

That's okay.

Returning to doing what you love can be a gradual thing, a slow awakening.  It starts with the smallest of projects: a single poem, a single journal submission.

Today I have two poems in a lovely online journal: Masque & Spectacle.

I also have three poems up at one of my favorite online journals: Arsenic Lobster.

I am setting aside a bit of time, not every day--but a couple of days a week--as designated time for writing and submitting work.  If I am unwell that day, I will reschedule, just as I might for any other appointment.  I am making creative time a necessary aspect of self-care.  Larger projects can wait.  It's okay if I don't have a book manuscript.  It's the regular participation in the act that matters.  With time, I believe the bigger projects will emerge.

***

Food, Chronic Illness, and the Principles of Non-attachment

Once again, I have been absent due to exhaustion, health issues, and the inability to put it all in prose form.  In addition to the ongoing struggle with autoimmune diseases (Hashimoto's and Lupus, in this case) I developed an additional malady that has made it difficult--sometimes impossible-- to eat.

I freaking love food.  I love to plan, to prepare, to consume.  It has always been, for me, a kind of everyday magic.  To take raw ingredients and turn them into something completely different, to move about the kitchen with love and intention, it's been one of my greatest joys since childhood.

I got my first copy of Joy of Cooking at the age of 10 and read it over and over again, as if it were a novel.  By the time I was 12, I was making homemade raviolis and baking bread and staying up all night to make croissants. My mom thought I was nuts.

I have loved to cook and eat for such a very long time.

Last July, I developed flu-like symptoms that simply never went away: stomach pain, nausea, vomiting, bloating, all pure misery.  I ate thin broth, jello.  Drank Gatorade.  I couldn't make it through my work day (something which was already difficult, due to terrible joint pain, tachycardia, shortness of breath and other symptoms from autoimmune conditions).

I called my (now former) GP's office after two weeks and was told over the phone it was the stomach flu.  I asked for an appointment and was scoffed at, told to just go to the ER if I felt so sick.  At this point, I was horribly dehydrated.  I went.  I was treated with IV fluids, given Zofran to stop the vomiting, told it was most likely gastroenteritis (again, stomach flu).  I went home, took Zofran, sipped weak green tea to stay hydrated.  The vomiting slowed down, but never really went away.  I was miserably nauseated every day.  But I went back to work.

At this point, my diet consisted of toast, broth, tea, Gatorade and applesauce.  I threw up once or twice a week, struggled to keep food down the rest of the time.  I talked to my Rheumatologist, worried it might be a reaction to immune suppressants.  We figured that high doses of NSAIDs and Prednisone might have caused an ulcer, so I stopped taking those.

I was a little better, but not much.

I found a new GP.  She was wonderful! A good listener, thoughtful, concerned. I was given a preliminary diagnosis of chronic gastritis, with a possible peptic ulcer, but told I needed tests to confirm. She added some GI meds and referred me to a Gastroenterologist.

Then comes, as always, more waiting and more tests: bloodwork, ultrasounds, endoscopy.

No celiac disease, no problems with my gallbladder, and surprisingly, no ulcer.

Chronic inflammation throughout my GI tract, yes.  But that doesn't fully explain why I can't eat.

Next, we do a gastric emptying study, to see if my stomach is working properly.

It's not.

So, we have an answer: Gastroparesis.  My stomach no longer works properly.  The nerves fail to contract, to grind the food and push it along from the stomach to the small intestine.  It just sits there, making me feel sick.

Very slowly, far more slowly than is normal, the food is digested, eventually.  If it's liquid, it will move along due purely to gravity.

As of today, I have lost 41 pounds due to this illness.

The damage to my stomach is likely due to my malfunctioning immune system, according to my Gastroenterologist.  It's chronic.  And hard to treat.

So, I've made some changes.  After two years of declining health I have to do things differently.

First, I have done some extensive research into diet and have gone through some hellish months of trail and error to figure out what works for me.  I am now managing the Gastroparesis with a highly modified diet, an anti-emetic, and some strong doses of reflux medicine.

I am working less hours.  In fact, I asked to cut my time in half.  This was a HARD decision.  I feel strongly about having a work ethic, about busting my ass to get things done and take care of my family.  But landing myself in the hospital isn't helping anyone.  So I let it go.

I let go of what I think my life is supposed to look like.  I am valuable whether I work forty hours a week or twenty.

I am struggling to let go of my attachment to how I look.  My weight is a nebulous thing.  I gained twenty pounds on steroid treatments and my face was so swollen I didn't look like me.  Now I am much, much thinner, and with that comes all these "compliments" on how great I look, but of course, it's just from being sick.  I can't control that, any more than the 40 pound weight loss from Gastroparesis.  It doesn't matter what I look like...it will ebb and flow along with these chronic health conditions.

Letting go of my attachment to food has been difficult.  I still love to cook.  And, when it doesn't make me sick, I still love to eat.  I have eliminated a number of foods from my diet.  I eat frequent, mini-meals that are easy to digest: soup, yogurt, smoothies and juices.  I am grateful that there has been some improvement and I have been feeling a bit less nauseated.  I can enjoy small amounts of food in moderation, and I alternate between solid and liquid-based meals.  It seems to help.