Monday, March 6, 2017

All Good Things, Really

It's amazing how leaving an unhealthy situation can change your life so dramatically.  I feel so much better lately.  I am excited to finally get back to work on some writing projects, to cook wonderful things, to be with all the people I love.

Life with mom and dad is still heartbreaking, but you learn to love the small moments.  Sometimes I see people their age who are healthy (able to care for themselves, travel, live independently) and it's hard not to make comparisons about quality of life.  Dad doesn't speak very often and barely lifts his head.  Mom has both physical and cognitive impairments that leave her unable to lift herself from a chair or even put on a pair of pants by herself.  She believes there is a nemesis who steals her toothpaste and creates "fake" copies of her books to torment her.  She believes she receives anonymous, threatening letters (memory care residents do not get mail).  She believes my sister works at the nursing home but does not speak to her and that my brother (a lifelong bachelor) has a "secret" wife and baby he is keeping from her.  I have to remind myself that while these things are not real, they are real TO HER.

So, distraction is the best strategy.  You cannot talk someone who is suffering from neurological impairment out of a delusion.  Instead, you must change the subject.  Talk about sitting outside during a bright blue and green spring day, about favorite places to go and favorite foods.  I bake them cookies, which seems like a small thing, but it makes them so happy. Last week I even managed to corral them into a game of cards! Dad and I played as a "team" against Mom. We played War and he did flip over some cards for me and point to the images, especially the face cards--the Jacks, Queens and Kings.  We "won" two hands and I asked him if we needed to play again to give Mom a chance to win and he said "Why not?"

It was a really good day.

I am cooking again!  My stomach is still dysfunctional (once you have damage to your organs, that is pretty much that), but it works well enough not to need a feeding tube or TPN which is really, really fortunate.  I am hoping that all my medication has my autoimmune diseases under control so there will be no more new and major issues.  It's March already so I want to make Colcannon Soup and Irish Soda Bread and maybe a fancy Chocolate Guinness Cake!  I have to be careful what I eat and how much but soup and bread remains a pretty safe bet! I've been taking digestive enzymes to help break up the food (Papaya extract).  Ginger and Mint are also awesome for digestive troubles--I take them in teas and lozenges.

Oddly enough, Probiotics make me super-sick.  I think they contribute to bacterial overgrowth because I have dysmotility, but who knows?

I am working on a book review and writing pieces for the manuscript that I am thawing out after letting it languish in cryostasis for a couple of years--heh! I miss being an active writer and poet.  It's been harder than I expected to to make it a daily habit, but I'm getting there.


Reading: Just finished Night Film and The Word Exchange and I am currently reading A History of Wolves by Emily Fridlund which is so beautifully written it's kicking my ass.

Watching: Season 2 of The Magicians and Season 2 of Colony and I am re-watching Buffy on Netflix because Why Not?

Cooking: Mostly cookies and stir-fry noodles and brewing endless cups of fancy loose-leaf tea.

Friday, March 3, 2017

45 and Still Alive

So, it's been a month since my last day of work already!  Where does the time go?  I turned 45 on February 17th and it was a really wonderful birthday.  I am surrounded by people I love.  I can walk (not for a super long time, but long enough), drive, and keep food down (so long as I am not foolish!) Life is never perfect, but I am so, so grateful right now.

I am doing well, I think.  I had a cortisone shot in my crazy bad leg on Tuesday and now that the soreness has (finally! after 3 days of ice packs!) gone away I see some improvement in my range of motion.  I also had my IV Benlysta on Tuesday along with my shot.  No changes to my medication.  Still on Prednisone, but hoping to see the dosage continue to drop...

Not waking up at 3 a.m. anymore has helped me tremendously.  I feel almost-normal.

I am happy.

I am reading lots of books. I am writing again, albeit kind of slowwwwwwwly.  That's okay though.

I am cooking again, too.  I baked some snickerdoodles for my mom.  Of course there are fancy soups in the works and maybe a fabulous chocolate cake?  Who knows?

Aaaaaand I just dumped a glass of ice water on my poetry notebook, because some things never change! Off to dry my pages!!

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.