Friday, February 10, 2017

Sick life, quitting, and starting over

Every February I am sick, sick, sick.  Meh.

In addition to this crap cold my immune system (pissed off by this virus, I'm sure) is in overdrive and my joints are swollen and the roof of my mouth is covered with sores so I feel like garbage.

Soooooo, at least I don't have to drag myself to work because I QUIT MY JOB, YO.

My body couldn't take it anymore.

It's not worth getting up in the middle of the night to start work at 4 or 5 a.m. limping and barfing and suffering from headaches and blurred vision and all that business.  I realize I'm very lucky to be in a position to take some time off and get healthier.  I plan to work on a couple of book projects while also doing everything I can to get as well as possible.  I used to freelance before it became necessary to take a retail job for the reliable income and I'm hoping to get back to that, if I can.

My last day was a week ago.  I thought I might be sad but I am not sad at all just so, so relieved to be able to slow down a little.  My first week at home wasn't very productive.  My last couple of days of work were really, really rough with huge problems and extra work due to a number or issues with staffing problems and untrained people messing around with stuff they shouldn't touch.  I was stuck there for 11 hours (I was supposed to be working short shifts) and this kind of thing was becoming a pattern.  NOT OKAY.

I couldn't walk for two days after that because my leg was so swollen and painful.  This was followed by the sores and fevers/chills.  After that, I got slammed with this monster cold.  It is an endless cycle of pushing myself and collapsing.  Hopefully, that's going to change.

My main goals are to get healthier, spend more time with my mom and dad, and to write.

For all my frustrations, I am doing better.  Two years ago, Lupus attacked my heart and I was in the hospital where I contracted multiple infections, getting sicker and sicker.  I developed fevers so high they reached 105 and my body would go into uncontrollable spasms.  It was horrible.

So this cold and minor flare?  Kid stuff.

Looking forward to better days!

Tuesday, January 10, 2017

Another day, another moment: life with Dad

The holidays rushed past me, like they always do.

Since the onset of both of my parents' dementia everything has fundamentally changed.  It is the hardest thing, I think, to lose who you are piece by piece.

I am not writing much.  It's all been so distracting--just life--taking care of everyone, including myself.  I'd like to find a way to write about my parents in a manner that is respectful, but real.

Dementia is an ugly disease.

But there are still beautiful moments.

They had a Christmas party at my parents' facility last month, with music and snacks and decorations. It was overwhelming for my dad and he was having a hard time when Mike and I arrived.

He kept asking:  "Can you get me out of here?"

Sometimes it's so damn heartbreaking I don't know if I can take it anymore.

It's strange because he often reacts to me as if I were a member of the staff instead of his daughter.  I tried to hold his hand and he jerked it away, mumbling and angry.  It was so HARD.

My dad was a fine artist once.  He painted landscapes and seascapes, the occasional still life.  Dementia takes away your visual-spatial skills, as well as your short-term memory.  He can no longer paint, but he loves looking at his old paintings.

Mike actually went to his room during the party and brought back a painting for my dad to look at and it's amazing the difference it made in his mood and demeanor.  "Well would you look at that?" he said, in a calmer, happier tone than we heard in weeks.  "I thought they had all been lost."

He even found his own signature at the bottom.

Mike hung it up in his room and he sat at the foot of his bed and stared at it.

"That's really something." he said.


Dad also liked taking pictures with my phone!
Once Mike got him cheered up by looking at his old artwork we got him to have some treats and take a photo with us.  Getting him to smile is no easy task.  This is one of my favorite moments from the holiday season.


I am learning to take things as they come.  These are the lessons learned from a life with chronic / progressive illness.  In some ways, caring for others has taught me to slow down and appreciate things: a smile, a laugh, a nice memory.  I am so grateful for it.  Even the worst days have worthwhile moments.

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.