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!!