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Ever feel like you are a total weirdo and nobody understands you?

Me neither.


***

Still suffering from ±è°ù±ð»å²Ô¾±²õ´Ç²Ô±ðÌý¾±²Ô²õ´Ç³¾²Ô¾±²¹ 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-

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.

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.

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.

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.

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: .

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

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.

***

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.

Writing this post with my brand new laptop as my ten year old mac book has been stuttering and unreliable for months and stopped recognizing the keyboard and touchpad about a week ago. VERY EXCITED. I plan to totally write all kinds of stuff now that I have a proper computer again. The tablet is okay, but it's not the REAL THING.

Still muddling through as a working person. It's brutal sometimes but I am doing it, albeit at about three quarters--okay maybe half?? capacity.  I am finally off prednisone and can see my cheekbones again.  My digestive system is slightly better as I have not yakked in the work trash can in two weeks. It is still, however, more or less in ruins so we will see what the GI doctor says next week.

Watching: just finished season two of The Blacklist.

Reading: The Light Between Oceans which is okay but I keep setting it aside to sleep ZZZZZZ.

Cooking: absolutely nothing because gut problems and I am too exhausted to cope with dirty dishes.

I have been gluten free for a week now and I would totally cut a b&*$@ for a waffle.

The unpleasantness of living in this angry body never stops.

Not even sure if it's helping because I had an apple the other day and I felt like DYING afterwards.

***

Why I am not writing:

I am tired like deep deep inside my bone marrow and cell nuclei and my hair follicles.  I am distracted by my other responsibilities like managing things for people who still need me and dragging myself to work even though my body is on fire and trying to prep non allergic foods when all I want to do is sleep as the dishes pile up but I don't have the stamina to wash them and netflix is calling me and I am just too exhausted to read books anymore and I want to be my old self again but somehow this no longer seems possible.

I want to wear a beautiful dress and go on a cemetery tour at midnight and drink a summery cocktail and go to the movies and eat buttered popcorn and travel and write a kickass horror novel and learn how to apply winged eyeliner. I want an uncertain future that   seems like really really cool shit might still happen like everything is just rollercoasters and cake with bits of ordinary in between.

***

This message has been brought to you by almost an entire year of system failure.

Gradually returning from extended dreamwalking in that unpleasant parallel plane of existence I visit when I am sick. Less shaky today having consumed one quarter of a sandwich last night without DYING. Also: chamomile tea is lovely and soothing.

I was so sick I was TOO SICK TO READ.

Let's add another stellar trip to the ER to my growing record although this was the most benign so far although I do not recommend dehydration it is very very awful to retch nonstop until all that comes out is some kind of foamy mucous again and again until it feels like someone cleaned out your stomach with a garden rake.

Maybe I need to start taking vitamins and change my diet to pricey organic superfoods. Maybe I need acupuncture or a voodoo priestess to lift whatever curse has been placed on my tired, sad body. I am beginning to feel that I'll try anything level of desperation to feel well and whole and energetic.

This totally has to start getting better. I am so overdue for a period of relative good health.