Friday, November 11, 2016

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.

Sunday, November 6, 2016


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.

Monday, October 24, 2016

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.

Monday, October 17, 2016

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.  

Thursday, October 13, 2016

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.

Monday, October 10, 2016

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.


Friday, October 7, 2016

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.

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