No more Art for you!

So, I’ve decided to delete the Art and Excerpts/Quotes pages on the blog. The main reason for this is that no one ever really visits these pages, and also they don’t easily fit in with the content of the rest of the posts. But the immediate impetus for deleting the pages now as opposed to anytime before is that I’ve set up a Tumblr page. I’m still quite new there, but it seems to me that Tumblr is similar to the way I write this blog – it’s set up for posts speckled with photos, videos, and audio. It’s quite easy to post things there – anything I see or think of that inspires me or is interesting, so I’ve already got quite a stream of images, videos, and poems/quotes for you to peruse, along with occasional comments. If any of you also have a Tumblr, please follow me and I’ll follow you back!

Anytime you get sick of reading about FM or cooking, feel free to visit my Tumblr page! Yay. I’m excited to have a place that encourages me to think about art, writing, and music more.

I’ve called it Autobiography of Blue as well, to ease the move.

Empty Days, Nose Wrinkles

It’s cool and gray outside, with slight streaks of pale blue brightening the sky. There is some sort of bird chirping, and the sound of tires over pavement – it sounds like the morning, and I have images of myself bustling about my apartment, brewing coffee, showering, getting my things together, driving off to work.

What such a drive might look like:

(Also, it’s really amazing how many pictures people take of their morning commutes from inside their cars).

I miss that sort of purpose and movement that is pre-built into the day when one has a job or goes to school. You’d think it would be wonderful to have nearly everyday completely free and open, waiting for whatever you want to fill it with, and it can be, but when you see endless strands of these days stretching before you into forever they can start to feel empty instead of open.

It is 8am and I’ve been awake-ish for a couple hours. My sleep patterns for a month or so have been terrible – staying up into the wee hours, sleeping until 11 or noon. I’ve been occasionally taking FibroSleep from the enjoyable site ProHealth (they donate some part of their proceeds toward FM and CFS research and send out a newletter with useful info), which has melatonin & valerian in it and makes me sleepy 2/3 of the time, but I’m concerned about taking it regularly. So it’s a bit exciting to be unexpectedly awake so relatively early, but I dread the toll it will take on me physically later, as I didn’t go to bed any earlier than usual. My brain simply started chattering, and when it’s in such a mood there can be no fighting it.

Here’s a lime jello brain:

Yesterday I made a cake, so that’s exciting and should help with the probable misery I’ll be in later. (How could it not?!). I made the chocolate cupcake recipe from Vegan Cupcakes Take Over the World (which they easily could do),

but I made it as a cake instead because it’s slightly easier and I feel like it tastes different although clearly that is impossible. I also made the vegan cream cheese frosting recipe from the same splendid cookbook, with a slight change in vegan cream cheese to butter ratio.

Here’s the cake without the frosting (not terribly appetizing yet, p’raps I’ll post another picture when it’s prettier):

If you recall, many moons ago I wrote about my chocolate/sweet things cravings and how they increase exponentially when I’m in a lot of pain (which I feel like has psychological and chemical implications – after all, carbs/sugar increase serotonin levels). So, in the last year I’ve gotten really into *vegan* baking, in part because it seemed fun and interesting, but mostly because it was a way of indulging my cravings while knowing exactly what I was eating and not feeling gross about it. If you are unfamiliar with the magical world of vegan baked goods, let me assure you they can be even more delicious than what you’re used to, or at least comparable. You are missing out! Get yourself a cookbook!

Like this one!!

Or, just wait a little while for me to open an online vegan bake shop and I will mail you dessert!! This is something I’m seriously thinking about doing – I could share the sweetness with the world, have more excuses for baking, and have something to feel excited about/look forward to. I just need to bake lots of things I want to offer in the shop, photograph them, and then put the shop together. I’ll keep you updated! There may be cheesecakes and cobblers in your future!

Here, for instance, is a vegan raspberry cobbler I made (yes it’s the same pan):

I’ve been reading an excellent poet lately who I’d never heard of before – Lisel Mueller. My mum gave me the book for x-mas, and honestly I didn’t have much hope – usually when people give me poetry it’s rarely the sort of poetry I’d like to read (ie it’s truly awful). This time, however, I was shocked and delighted!

In similar news, I’ve been writing more, which is fantastic and makes me feel more like myself, makes the world feel less heinous, and makes my life feel more like my own. Not that any of the writing’s any good, but I try to remember that’s not the main point and it’ll happen on its own when it damn well wants to, probably when I’m not trying so hard and am just engulfed in the process. Kind of like looking at certain stars, how you can’t see their light if you look directly at them, but if you look just off to the side as though you’ve forgotten about them you can see the smudge of brightness.

Also, the way Whitney Port (from the questionable tv show The Hills) genuinely smiles, causing her nose to wrinkle considerably, makes me swoon. I will try to find you a picture of this phenomenon. OMG I found one!! Not the best example, but still, the lovely Whitney with her cute nose wrinkles!!
(Please ignore the girl on the left):

teaser

For those of you still stopping by, I wanted to reassure you that I have not fallen off the face of the earth. I will, in fact, reappear shortly and update you on biofeedback appointments, medications, cupcakes, visitors, gardening, and the general state of my life with FM/dysautonomia. I can sense your excited anticipation through the screen, even across all these miles. I will not disappoint you!

Here is a picture of anticipation:

and here is a picture of disappointment, which I hope you will not feel upon reading my upcoming posts:

Spoon Story

I came across this story, and while it is a bit lengthy I wanted to send you to it because it presents a great metaphor for what it’s like to have a chronic, invisible illness. For those of us who experience this, it’s validating and comforting to read about an experience similar to ours, and for others it offers a glimpse into what we go through. Plus, there are spoons.

Spoons, Michoacan, Mexico, 1994 Spike Mafford

Also! Don’t let this snippet of a post distract you from the more substantial post below!

the verdict (almost)

So on Friday I recieved a letter from Dr. Silverman, which I think informed me that I have dysautonomia. It was written oddly, so I am left with the tentative feeling that I either have the disease or I misinterpreted the letter. However, this feeling of being in limbo


will be dissolved this afternoon when I go in for my appointment with Dr. Silverman, in which he will give me the results, hopefully not in unclear terms. Rob has sweetly offered to go with me, and we may have lunch before the appointment, so that we can pretend that we intended to drive to Beverly Hills simply to have a scrumptious lunch, and dropped by at Dr. Silverman’s as a casual afterthought.

Alright, faceless people who may have stumbled across this blog while searching for gumby, I must go take a shower (perhaps I will discuss my arduous relationship with showers in a future post…get excited!).

I will leave you with two things I am excited about recently:

Joanna Newsom, who plays the harp and has the most bizarre voice and fantastic lyrics, with such words as “dirigibles” and “abominably” playing a central role:

And, mochi, which Ian thankfully introduced me to, and which I seem to be eating constantly (try it stuffed with capers and cheese!):

and here is someone’s cat named Mochi (apparently about to dive into the washing machine…?):

stay tuned for dysautonomia updates!

blech.

I wanted to write a post a week or so ago about some dream I had, but in the meantime I had 12 million other noteworthy dreams, combined with an unparalleled drop in general energy and motivation (hence the terribly long period of time I have gone without speaking to you, my apologies). I’ve been waiting to write a new post in the hopes that I will be overtaken by a bout of irrepressible excitment and energy and you will be lucky enough to read about it.

Alas, my FM symptoms have really skyrocketed lately, turning my daily existence into a sort of swamp of molasses. That’s right, molasses. I’ve been having lots of back pain which I don’t seem able to control, and my general pain level is increased. But the most freakish, overarching symptom lately is enormous exhaustion. It feels as though a formidable giant is placing their gigantic foot over my body and pushing down (not hard enough to crush all my tiny bones, but hard enough so that moving a single muscle is exceptionally difficult).

Despite this breathtaking fatigue, I’ve been reaching out more lately, which has been fun and impressive. I’ve reconnected with my long lost dear friend Ian, which has been full of delight, delicious food, and physics. One thing I love about being around Ian is that regardless of the topic we are discussing and my previous level of interest in it, his excitement about it is contagious. Excitement has been sorely needed in all this molasses (no, it is not a fantastic metaphor. The nature of the molasses is that I do not have the energy to find a new metaphor).

And! I watched a movie with Sam, my lovely, sadly faraway penpal, which proved to be even more enjoyable than I had hoped. (Distant but parallel activities are so much fun! Especially with Sam!). This, combined with my brother visiting and a follow-up FM group meeting at Cedar-Sinai hospital, has made me feel more like a living, breathing person who moves about in the world. Boris (the brother) and I went to the Getty, but despite the many flights of stairs and extensive walking/standing, it was stunningly beautiful and fun to be with him, and I did not collapse even once! The Getty is quite vast, and consists of a seemingly endless series of levels, intricately designed gardens, and ridiculous views of LA. Everyone seemed to know something about the stones in the outer walls (they each played a single note with hit with some hard object…?). It was unclear, but magical somehow.

I wanted to show you pictures of several new, exciting things in my life, thereby creating an air of cheerful lightness, but there is no room for that in the molasses (molasses is really a wonderful food item, and does not deserve to be used in this way, I know). Another time, perhaps.

Dreams lately:

1) A woman I went to Wellesley with, named Nicolette, had a photoblog in which she had posted photos of a girl wearing stripes and polka dots, holding a suitcase in one hand and an umbrella in the other. I left her a comment on said photoblog in which I praised her photos and said that I hoped she had a great, “underwear-less party” with the girl in the photos. Right.

2) Something horrifying involving cannibalism, murder, and rape. I’ll spare you the details. I will, however, say What the Fuck, dream.

3) I showed up at my therapist’s house to say goodbye before she left town (real life: my therapist is moving to another state). Her house, which I have never seen, had one wall made entirely of glass and one wall made of ill-fitting bamboo slats. Each room appeared to be one thing when first walked into, but once you turned around it was something different (kitchens sprung up in guest rooms, plants materialized in exercise rooms). She and I agreed that everything was “pretend,” and therefore not frightening after all.

–

I’ve found lately that I want to make grand gestures for the people in my life. Send them on scavenger hunts to find out why and how I love them. Mail them something heart-stopping. Enormous banners. Dances in the street. A collage made out of my teeth. Okay not the teeth thing, yuck. But some sweeping expression that would be real and would move them…

There is a television show called Monk. It is not particularly great. However, it’s main character, Adrian Monk, has OCD, and is also quite socially isolated. I can relate to this, which I am amused by.

In a recent episode (yes I watched it), Mr. Monk makes a new friend (who attempts to kill him, but never mind), and is so taken with the friend, is so thirsty for connection and so desperately thrilled that someone is spending time with him, that he officially asks the new friend to be his “best friend” (a query he first runs past his therapist). Mr. Monk knows my desire for banners and wild gestures.

Here are two things I love but do not currently have the energy to explain:

The actor Mark Ruffalo, who has a fantastic voice:

The poet Frank O’Hara and the painter Grace Hartigan:

Gluttony vs. Pain

I have come to the realization that I definitely use food as a way of dealing with pain, exhaustion, and other FM (fibromyalgia) symptoms. I think I’ve always done this to some extent with depression, but I’ve definitely noticed that in the last few months as my pain has increased and I’ve experienced new, distressing symptoms, I’ve turned to food.

This is not just any sort of food, of course, but chocolate and sugary foods. I’ve really tried to observe exactly what I am getting out of this unhealthy relationship (I say “observe” because I am approaching it without judgement, and because if I understand it better then I will have a better chance of eradicating it). It’s not that eating (large quantities, I should point out) decreases my pain and other symptoms. However, it seems to provide a distraction, a sense of comfort, and the brief (false) sense that I am taking care of myself (as in, my body gets my attention with its discomfort, and I feel good that I am responding in some way as opposed to ignoring it completely).

This feeling of taking care of myself is a pretty powerful one — in the past, and still often now, I respond to my body’s unhappiness by either ignoring it or turning against it (as in, fuck you body, if you’re going to be that way, I’ll stay up as late as I want/overdo it physically if I want/etc). I think this kind of reaction is pretty normal considering the chronic nature of the illness, and the fact that it is quite difficult to find and maintain measures that actually decrease my symptoms. Becoming frustrated and sabotaging myself physically has been my default way of dealing with this for awhile.

Yet! I am finding new ways of coping that do not pit me and my body against each other, and I am (slowly) implementing them! My body and I are beginning to talk again! Even to hang out occasionally! It is all very hopeful.

However, I have yet to find an alternative to this immense consumption of chocolate and sugar. This is unfortunate, as it will eventually have the effect of making me gigantic. Blast. I tell myself at least it is better than self-medicating with alcohol or drugs.

As a side note, I would like to draw your attention to the fantastic ad campaign that Cadbury Chocolate apparently put out to put a more athletic face on their confections. It is really quite uplifting. I always eat a bar of chocolate with my lover after doing exercise of some kind (notice the bowl of fruit in the foreground!). And often while wearing a robe. And ALWAYS while rollerblading. SUCH a great idea.