Chicago

Several things happened upon my return from Chicago. I was diagnosed with peripheral polyuneuropathy (of the large and small fibers), my mother had a nightmare so distubing she woke me in the middle of the night to see if I was okay, my father asked me what I intended to do when he and my mother passed away.

And, in response, I resolved to shove my health issues to the very, very back of my mind and put something heavy in front of the door.

Chicago was hot. Even the little jet I flew in on seemed to be having trouble staying cool, despite the conditioned air. I had a window seat (always) and I took in the city, staggered on the coast of Lake Michigan.

The lake had a summery color, chambray blue.

J. and I go way back...sorta. We didn't grow up together or anything, we just casually bumped into each other on the Internet, liked each other's writing and when I moved to Chicago, J.'s hometown, for school we met in person for the first time and became fast friends.

In Chicago, I promptly did a bunch of inadvisable things. I ran myself ragged on my very first day, despite having been up since four in the morning. The next day I stripped off all of my compression garments, put on a bikini, went frolicking in the 80 degree heat and lay on the hot, hot sand.

WHO NEEDS OXYGEN TO THE BRAIN?

The next day I couldn't even sit up, so I rested all day (and looted the contents of J.'s fridge) And the next day I was at it again. I ended my trip on a rooftop, with the Sears Tower just visible in the distance.

At home I feel pensive. Surely, I want to move out. Surely I want to live more broadly than I am now. But even these thoughts are at odds with the fact that even five minutes in direct sunlight was enough to sap my energy at an alarming rate.

I tried in vain to convey to J. just how little physical and mental energy I had. It's like puncturing your gas tank in the morning before you drive to work, I said. That's what a hot day does to me. Everything takes my energy. Standing while I'm brushing my teeth, a shower, any meal more complicated than a sandwich or a bowl of cereal....

It takes me an hour to get ready in the morning, then I lie down for an hour before I'm ready to go. When I look at it this way, trying to ignore my health issues in favor of living a little feels irresponsible at best. My doctor said I should only spend 20 minutes a day being upset about my health, which I think is just rich.

Because what am I thinking about while I'm wrapping my abdomen in ace bandanges so tight I can hardly breathe? (That's my version of an abdominal binder, to prevent blood pooling.) Or when I rest my smarting fingers from yanking on my compression tights? Or when I'm trying to schedule my life so carefully so that one event falls on every other day, where an event is an excursion of less than two and a half hours including transportation. Which sounds simple until you find yourself walking away from a poetry reading because if you don't you won't have enough energy to drive yourself home. And it'd be one thing if these things were predictable or stable in any way but no. No one has any explanation.

So how does one live well while losing a tug-of-war for one's quality of life with a disease that isn't even taken seriously by one's physicians?

I suspect that I'm going to be the only one who can answer that question in the in the end.

Oh, Yvette, wah, wah, wah. Have some more pictures. I did go bra shopping with J. and we found out we're the same size! "We're bra buddies!" she said. I said, "I'm gonna steal your shit." But The Little Bra Company did not pan out, sorry to say. Just look at this little slip of fabric! Here, a 28C or some other size I probably was when I was 9.

I might have bought it anyway had not it been for one problem. The band. TLBC claims that their bands run small. They do not. Their bands are the same size as other manufacturers! Thus, a 32C is too large in the band! So the $100 credit I bought is totally wasted (on bras at least) I'd have to gain a lot of weight to be a 32 in the band again, and I'd have to lose a lot more to drop down to the next plausible TLBC size, a 30C, a prospect that should it come to pass, bras would be the least of my worries. So TTYL, TLBC. I suspect I'll be spending my credit on underwear and maybe getting my favorite of the bras I ordered, the Sascha, tailored down to my size by tightening up the band. The cups, for the most part, fit fine. Slightly small.

If I were the TLBC, I would advise that it is the cups, not the band that runs slightly small.

Shit is complicated, isn't it? So in the end, I have one TLBC bra that needs tailoring, the Sascha, one Betsey Johnson bra in a 30D and one ancient French bra I bought from Filene's Basement in a 65DD or some incomprehensible Euro size that I finally fit into.

Thoughts on my Body and The Little Bra Company***

Bras are a big deal to me. I 'filled out' early as a 10-year-old and I hated every moment of it. I hated the training bras, I hated the stares. I was a small girl with larger than average breasts then. Now I'm a small woman with small-ish breasts that are strange to her, but nevertheless, need a bra.

With being sick for so long, I was distantly aware of the fact that I was losing weight, but didn't really pay attention to how much until I dug out my summer clothes from last summer and discovered that they were ludicrously ill-fitting. My shorts gapped in the front, almost flashing my underwear, my shirts sagged unattractively at the neck and my sundresses hung on me like shapeless sacks. I was so dismayed that I whined and complained to everyone who would listen. My mother, my sister, even my father and brother. My clothes don't fit,** I lamented. What's a fashion-obsessed girl on a disability income to do?

The worst by far was my bras. The bands rode up savagely in the back, while the straps fell down over and over again, no matter how many times I fixed them. So not only were my clothes frumpy, but my bras weren't doing their job.

And that's just not acceptable. As a girl who has been as large as a 34G, I know the importance of a well-fitted bra. My bras never fit, ever, until very recently and my breasts have paid the price. Unless I'm wearing a bra, my breasts have no shape or perk to them whatsoever. They just sit there. It's one of the few things about my body that makes me truly sad, as silly as it sounds. 

We are our bodies on some level and I still remember being a girl of 11 and having to wear a D cup and crying about it because I would not stop growing. It was my first implication that my body, the third and most distant iteration of myself, was not under my control and would not be brought under my control by any amount of wishing, praying, raging or crying. 

Earlier this year, I went on a spree of bra alterations, snipping my bra bands and then re-sewing them to make them smaller. It was a janky job with mismatched thread, but what a relief from back straps riding up all of the time!  All of my bras are either ratty, cheap, too big or some combination of all three, and I am itching to replace them. 

Enter The Little Bra Company. Owner Emily Lau's line of bras are designed specifically for petite women with smaller frames and smaller chests who have trouble finding their sizes elsewhere. Both cute and practical, there are strapless bras, convertable bras, switchable straps and a number of different cuts for varying necklines.

I'm really drawn to the Lucia, with its lovely lace detail, and I've read a number of reviews that suggest it's a really good bra, if not a little big in the band.

 
I wasn't sure whether I could fit TLBC's bras, which by all accounts run quite small, and when I tried to size myself by their method I ended up with a nonsensical result. 

Underbust=28 (+4) =32

Overbust=32

32-32=0?!?

The difference between the underbust+4 and overbust is supposed to equal your cup size! A=1 B=2 C=3. When I e-mailed about it, the representative said that most people who got these 0 results where AAs and AAAs, but one quick glance at my chest reassured me I was neither. This is why I don't really like the this particular method of sizing. For a long time I had bras that didn't fit because I could never calculate my size, combined with always being incorrectly sized at places like Victoria's Secret that didn't carry my combination of smaller band and larger cup.

I'm really hoping the Lucia fits well because it is just too cute. It's nice to see bras made specifically for petites since this market is criminally underserved in the mainstream. Right now the range of sizes is from a 28-38A, 28-36B and 28-34C, with not all bras available in all sizes yet. 

Recently, I ordered the Angela in a 34C and I liked almost everything about it but the padding. I wore it around for a bit, but there was something that just felt off, and I'm sure it was the padding. Because of the shape of my breasts, an attempt to create cleavage by pushing them together is both unflattering and uncomfortable.  This makes me think the Lucia might not be such a good idea. The Sascha, a strapless bra with removable padding and switchable straps might be the best bet, even though the Lucia is just so much prettier. 

Please look forward to the follow up to this review where I hope to try on all the bras in an range of sizes at Isabella's, a lingerie store in Chicago where I'll be travelling this weekend to meet up with a friend. Guess what? She needs new bras too! Petite girl bra shopping field trip! 

**Said with plenty of First World W(h)ine.
***Still having wacky symptoms, just hitting 'pause' on the universe right now.

Jesus Lives

So my rheumatologist called me back. Thank Jesus Christ. Only God could be responsible for such an action. I was shocked. Shocked. This action clarified to me that it was my ortho who had brushed me off via PT, although both of them had avoided my calls. My rheumy out of sheer discomfort maybe? Or could it be that the nurses had not passed the message?

I'm completely unsure why she ignored my call these past two weeks and is returning it now. When I spoke to her nurse, I told her about my ortho's bad behavior, and asked if my rheumy could speak to him. I want an apology.

Calling my doctors on their bad behaviour is really important to my self-respect.

She refilled my monthly pain prescription and refilled it at three times the usual amount! With a refill even. Does this mean, sorry I brushed you off?

Why not just call me back in the first place, geez!

I'm going to talk about something else next.

My sister is graduating from University of Pennsylvania with a Masters degree in Social Work. I am very proud. I also, a few ago, found myself in j.crew buying a dress I really had no business buying because it was for a "special event."< Here is a link to it. It looks better on me than it does on the model though. I'm curvier. I have busy hair that I don't want to compete with the pattern, so I guess I'll pin it up. And then on events like this I like to wear a piece of jewelry that our grandmother left me, so maybe her sapphire ring.

But shoesss. I have heels, but I don't know if my gimp hip is up for them. Some cute yellow flats would be nice...even some simple black ones...I don't know that I have a suitable pair though. Despite my complete and utter love of all things clothes related, most of my money goes to far less interesting things.

I'm actually in a position where I have to buy at least some new clothes this summer, because I'm 20 pounds less than I was last year. Yet I have a strict budget and I won't enjoy it as much as do when I just blunder into j.crew and they happen to be having a sale.

Forward we Look & Forward we Go

So I didn't get my residency. I got the letter the other day. "This looks like a rejection," I said to my brother. Then I laughed, opened it, scanned it to confirm my suspicions, then tossed both envelope and letter into the kitchen recycling. I hobbled my way upstairs to work on a submission to a magazine I admired, Sixth Finch.

With my calm head and reduced pain, everything seemed lit in the light of the possible. I called about an open mic poetry reading, then decided to go to the reading, even though there was no open mic, just because other poets would be there and it had been so long since I'd gone among my kind (so to speak.) Poets are much less solitary than fiction writers. They know they need each other to make things happen.

I've started PT for the scoped hip. I thought I was going to be a superstar, but wow it was painful! I hid my face after and said, "I'm so out of shape." PT said I wasn't though, he said I was actually strong and healing fast, considering I was down to just one crutch out of the house and could manage my house full of stairs with no crutches at all.

The next day, however, I was still in pain. My surgeon said to call him if I needed more pain medicine, but my experiences have been so awful, I'm actually frightened to. I just recently wrote a letter of complaint to my migraine neuro about the way she treated me at out appointment (see this entry) and to my surprise got something of an apology. It was on my voicemail, but I could tell by the way she spoke that she remembered what she had said. Words are like pictures in a gallery to me. If they are written, excellent. If they are spoken, it's a good as the person being in front of me. I could hear how harried she was in her voice. Fear? Had I gotten her in trouble? There was not direct mailing address so I just addressed it to the hospital address care of. It had passed, maybe, through many hands. What had aggrieved a patient so she felt the need to write a letter?

She said I'm sorry at the beginning and I apologize at the end. In the middle she missed all three of my major points entirely: 1. You accused me of wanting "high dose opiates." 2. You tried to foist chronic pain rehab on me even though I told you I wasn't interested. 3. Neither of the above were pertinent to my appointment once I stated that I was unwilling to take a lesser dose of tramadol.

I'll accept it. She's not a bad person. She made a bad judgment call. I just hope she thinks of this and remembers not to make the same mistake twice. I could have gone off on my own tangent, like how the Clinic thinks that for every patient in pain the same family dynamic evolves, where the family revolves around the patient in pain, when nothing could be further from the truth. I'm not going to pay thousands of dollars for them to teach me what my parents taught me from the time I was a child. This is my life, I am responsible for myself. I have great personal resources that I can tap when I am in pain and discomfort in order to live my life as normally as possible.

Hell, they should hire me.

In other poetry related news. I want to be a poetry whore.

Excuse my language. But in the interest of bringing poetry thousands of years back to its roots of being performed in a public forum, comes the Chicago Poetry Bordello. With its mix of 21 century century general raunchiness and an air of the Steampunk. Plus I would get to dress up. Poetry, fashion, music and a grand game of 'let's pretend.'

My thought: We have to have this in Cleveland.

The Museum

I love that the art museum in Cleveland is free, because when you're in a mood (like I am) you can just roll up in. When I was younger, I remember being shocked when I visited other cities that you had to pay to visit their art museums. To me it seemed unthinkable, like charging admission to a library.

This was my favorite piece of art when I was a little girl. I loved this little girl's clear expression and her beautiful gray dress. I told my dad I wanted a dress like that.

Guys take their dates there. Of course everyone's been, but a couple can feel each other out, by listening to what the other thinks of certain pieces. When I go with my friends, I love to tell them what I think of the Egyptian and Etruscan art, and then the Impressionist and Surrealist art.

Some of it is so old and so finely rendered they have to keep it in the basement, far away from the light of the sun.

I wonder what merchant's wife wore the beautifully worked gold necklace saw. Was she older or younger? Was the marriage arranged? Did her husband take joy in her presence?

Did she love her necklace, in other words, because it was gold and precious or because it came from him?

I can't tell you how many Code of Hammurabi-era bodice rippers I've made up in my head from the time I was like seven until now.

Poetry about artwork is called ekphrasis. Look at the sexy, bold Greek-ness of that word! "I'm working on an ekphratic piece." Saying things like that is almost enough to make people forget to make a snide comment about me throwing my money away on a poetry degree. Almost.

I'm writing about The Death of Marat.

I actually read about the death of Marat before I ever saw it. One thing about his death struck me in particular. As he was dying he called, "Aidez-moi, ma chere amie." That is, my dear friend, help me. At first, I thought he was crying out to no one, in desperation. Later I learned he was calling Simone, his paramour, elsewhere in the building. I also learned all about Charlotte Corday, his assassin. It was a fascinating story, though I'm still not sure why I was so compelled by it.

I wrote:

In the Death of Marat, I am Marat, composing, humming
nothing too memorable, nothing complex, for soon I must be killed.

And of course there's much more but I can't put it here if I intend to publish this piece, which I do. Elsewhere in poetry, I'm trying to do a residency, or go into artistic seclusion and work on my manuscript. There's one in the woods of Minnesota I really like where you get your own private room, studio space and free meals.

And in health news I finally found a doctor willing to treat my pain after what, two years? She is very kind. On the day of my appointment my dad was actually late coming back with the car so I walked the office which was 4 miles away and up a large hill. I thought I was going to die. My clothes were stuck to me with sweat, sweat was pouring down my forehead and by the time I got to the building I couldn't quite hold myself up and was clinging to the walls

It's typical of me, to be impulsive and not necessarily exercise good judgment. I just knew I didn't want to wait three more months.

Next up, I think I might talk about my undying affection for fashion and how every doctor gets to see me in mascara, in tights and dresses and hats and oxfords. I miss being in Chicago honestly, because no one in Cleveland seems very interested in how they dress. Ugg boots, jeans, fleeces and puffer vests. I feel like a tourist in my own city sometimes.

Clothes Mouse (Petite is not a Size!)

Before EDS got my ass in a choke hold, I had a deep love for fashion. Even in grad school as I was just beginning to get ill, I was known in my program for being stylish.

During the harsh Chicago winters I wore retro woolen overcoats, collared shirts, sweater vests and blazers over jean pencil skirts. In retrospect, I liked looking nice on the outside because I was often feeling pretty crummy on the inside.

If you'll look to the right, you'll notice a not-insignificant number of fashion-related links. I keep on thinking (however impractically) about starting a petite-fashion blog. I haven't yet found a blog by a petite woman over a size 0 (seriously.)

If I were to do it, I suppose there would be less emphasis on where to find teeny-tiny sizes (I'm not teeny-tiny), less emphasis on alterations (can't afford them and don't always need them) and more on creative ways to get clothes that fit well without spending a lot of money.

Women who are mid-sized and plus-sized and petite often have their own issues. For instance, I have a small band size (30) and a fairly large cup size (DD) which limits me in where I can shop for my bras. If I need something altered, it's usually a bra!

Many retailers who stock petite sizes don't carry beyond a size 12 or so. When I was 50 pounds heavier, nothing ever fit me properly.

I would call it Clothes Mouse, since I'm 1. A Clothes Horse (according to my parents) 2. Poor as a churchmouse. 3. mousey as in small, shy/soft-spoken and plain.

I'm sorely tempted by this little venture, never mind the fact that there is already a blog called Clothes Mouse on Blogger, meaning I would have to take my show on the road to Wordpress (most likely) and succeed at being more fabulous than that other C.M.

I have high hopes, because I am pretty fabulous.

Plus, I'm tired of whining all the time.