transballad

The Museum

2012-02-15T02:30:00.000-08:00

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.

The Poetry Entry

2012-01-23T18:42:00.000-08:00

Some of my work can be read over at elimae. I was published in Starting Today: 100 poems for Obama's first 100 days. My poem in that book Missing Metaphor for Time is negatively mentioned by Anis Shivani of the Huffington Post here. I have a few other publication credits to my name, but those are the most interesting ones.

My mother taught me to read with a big illustrated childrens' bible and an illustrated dictionary. When I started kindergarten, I was the only one in my class who could already read. When I was eight I started writing. But I didn't start writing poetry until my junior year of college and only by accident; I needed a credit and a poetry class was open.

When I first got sick I was right in the middle of my masters thesis and the timing could not have been worse. It was fall going into winter in Chicago, I was cold and I was sick. My apartment was freezing; I slept in sweats with the oven on 400 degrees. It was a small program, so pretty much everyone in the program knew I was struggling with completing the thesis, but not why I was struggling. Because I was raised to conceal every sign of pain and discomfort, I didn't tell any of my schoolmates what was going on. Looking back, I wish I had.

Somehow, or more likely, with divine intervention, my thesis was completed. For two years after I didn't write anything. I wasn't too sick too write, although I was quite sick. I just didn't write. Then, out of nowhere I started writing again last month.

I feel badly sometimes because I move so slowly. One of my schoolmates has published three chapbooks and a collection and writes nonfiction too. At first I tried to schedule work times, but the unpredictability of my symptoms put a swift end to that. So, as much as it galls me, I just work as often as I can. Surprisingly, I can get a good amount of work done this way if I pick up my yellow pad whenever I have a spare moment. Best of all, it has a snowballing effect: the more I do, the more I want to do and the more I get done.

Because I started my thesis at the same time I was getting sick, I have a lot more material to work with than I would have imagined; there was no major change in theme between then and now. The idea of this chapbook is the illusion of control we have in our lives and the tentative title is "The Queen Constellation."

I really hope I'm able to pull it off.

2012, EDS awareness, etc.

2012-01-13T09:30:00.000-08:00

It's a new year. Resolutions have never been a huge deal to me because of my complete inability to stick with them beyond the three week mark, but this year is going to be different. This year I am resigning myself to being sick for the foreseeable future. On her blog, Michelle has expressed perfectly why this is a good course of action. (Also check out The Dorothy Shoe Project while you're there.) In many ways, that is a great comfort. It actually makes me hopeful, because I can stop aiming for impossibilities and be reasonable for a change.

I can breathe a sigh of relief if I know I don't have to force myself to get a full-time job and move out of the house and be self-sufficient by the end of the year. Ironically, it's that kind of thinking that leads to despair. Accepting this body as it is gives me glimmers of hope for my future. Small ones, and nothing like the way I used to feel about my future when I was in grad school, but that's all right. EDS is in my life now. Well, okay then.

On this blog, I can change the subject I am going to change to subject. Not that I am going to stop blogging about EDS altogether, but other topics will more frequently make their way into conversation.

Before I do change the subject though, I want to talk about awareness.

It puzzles me that people seem to be focused on raising EDS awareness via shows like Dr. Oz or House (before they actually featured it to everyone's general dismay.) This is not how diseases come to be known by the public. Awareness comes from doctors. As more people are diagnosed, they inform their friends and loved ones. When a person of high stature is diagnosed, a news story might come out, which will catch the attention of the general public.

So I think it would be wise for a bunch of people regionally to come together, rent a space makes some sandwiches and cookies and try to get an EDS expert to come and speak to local doctors, nurses, physical therapists, etc. I think this would be very difficult and probably expensive, but Dr. Oz is almost certainly never going to do a show on EDS. And even if he did, I don't think it would be half so effective as going about the problem in the way I mentioned. Doctors will listen to another doctor much more easily than they will to a patient insisting, "But I saw it on Dr. Oz!" The goal of awareness should be to get people diagnosed quickly, accurately and treated effectively. The general public can't do that, I'm sorry. It'd be nice if my friends knew what EDS was, but I'd really prefer if my doctors did.

I am trying really hard to write a chapbook this year. A small book of poems, somewhere around twenty pieces. You wouldn't think it would require such a heroic effort. But of course, EDS is drawing in crayon on all my carefully typed up plans. Editing a poem is really hard work and it requires a lot of concentration. I've been having 3-4 migraines a week, which makes it really difficult to plan anything. I just grab my notebook in one hand and my Imitrex in the other. My stomach is also still in quiet revolt, but I'm better at eating, so I haven't lost anymore weight.

I'm volunteering with a local organization dedicated to getting people paid a living wage and by extension writing to lawmakers and trying to insure that unemployment and health care benefits don't get cut. I'll be doing most of my work via e-mail and phone, editing and writing letters and possibly blog posts, but I really look forward to it.

I also want to talk about a million other things: books I've been reading, autism, interior design, racism and more about the poetry I write. If any of these sound interesting to you, please say so in the comments!

Uncertainties

2011-12-03T07:00:00.001-08:00

I did not expect my horrible experiences with doctors to make me leery of people in general, but they did. Even though I long to make friends, I find myself asking new people exclusively about themselves; I realize I don't trust them with much knowledge about myself. Or maybe it's that I don't trust them with medical knowledge about myself? But then again, nowadays how much can I say about myself without alluding to something medical in nature?

"I'm not working, I'm disabled." (Just uttering this phrase is enough to make 80% of people uncomfortable)

"I'm a poet." (When I say this, people look at me like I say I build sand castles for a living.)

"Well, I wanted to be a professor but..." (Mentioning frustrated hopes and dreams to people I just met?.

So I'm stuck between desperately wanting to meet people, and desperately not wanting to talk to them.I feel like there are two of me sometimes: the 27-year-old me who is healthy and hale and can set and accomplish any goal, and the realtime 31-year-old me who sometimes goes up the the stairs on all fours and carries a plastic bag in case she needs to puke while driving. I can't seem to figure out that one of these people no longer exists. The former me is my favorite, so capable, so self-possessed, so ambitious, so bright. She has a masters in poetry and she would like to teach. Younger children, not necessarily college students. Her work is pretty good, you should read it! Very much about womanhood and identity and sense of place....

And then there's...uh...me. Shy of people and looking lost, sick constantly, bouncing from doctor to doctor, trying to find one familiar with her not-so-rare rare disorder. Overwhelmingly most of my energy this past two years has gone towards getting a diagnosis and getting treated. And that's right, that's where it should have gone.

So why am I so sure a new group of people would reject someone like me?

The Rest of My Life

2011-11-28T06:35:00.001-08:00

We went fishing on an unseasonably warm day, but dad insisted we wear our long underwear anyway. "Is all this necessary?" I asked as I pulled out my top and bottoms that I hadn't worn since a particularly diabolical Chicago winter.

My sister skipped her ill-fitting bottoms borrowed from dad and asked for a pair of my leggings instead. I wore a short sleeved shirt (mistake #1) under a thin cardigan (mistake #2) and a puffy sleeveless vest that I accurately call "my bullshit puffer vest." I did wear a thick scarf, earmuffs, a hat and my fleece lined wool mittens. I thought I wouldn't need any of it. I was wrong.

Before heading to the lake we stopped at the bait and tackle store which happened to have dozens of taxidermied animals. Bears, ducks, little horned deer, even a polar bear.

My sister said we should pose so we did. Later we froze our asses off at Lake Erie and caught no fish, much to my dad's amusement.

In all this, and especially before this, during Thanksgiving I gave as little thought to my health as possible. I might talk about my health constantly here, but that's so I can live the rest of my life in relative peace.

My stomach has been a known offender since childhood, often dictating when and how much I ate. I've become masterly at adjusting my diet, mealtimes and the size of my meals to avoid its wrath. Until now the amount of food I can eat is too little to sustain my life.

The first doctor admitted I was too complicated for him, so now I have to find someone else.I have to find someone else. I haven't wanted EDS to take a vacation from my life this badly since I was pressed up against the deadline for my masters thesis.

The Dilemma

2011-11-16T06:38:00.001-08:00

I spent yesterday morning scrubbing tape residue off my body with rubbing alcohol, being tender around the spots where the tape had ripped my skin when it came off.

The area where the central line went in is itching ferociously which is good; it's healing. This is (was) my central line. Her name is Terri. She needed a name because it was like having an alien in my chest. An alien who made me cough whenever I breathed too deeply and who poked me in the lung on the way in.

My hair has to wait to get washed because my shoulders hurt too badly and I'm just too damn tired to go through the ordeal of wash and condition and de-tangle and deep condition and rinse and de-tangle and leave-in condition then twist and pin.

Everything hurts. I lost much of my muscle with that ten pounds and now my joints are all over the place. I even made an appointment with pain management–reluctantly.The last time I went I got a prescription, but as I turned to leave, my doctor said, "remember you can't smoke any weed with this prescription." It was beyond insulting.

As far as my nausea goes, it's still here and Zofran only takes the edge off. The strange thing is that it goes almost totally away when I'm not physically active, and surges back when I am. The more active I am, the worse it is (has anyone dealt with this before? Does anyone know why this is?) This means that the doctors can't observe it while I am in the hospital, which is really, really frustrating.

It's like a part-time gastroparesis or something. When I went Christmas shopping with my mother in Columbus we walked for hours, and I was popping Zofran all the way, even though I hadn't had anything to drink besides coffee. I couldn't eat at all that day and at one point it got so bad I just went to car and lay down in the back seat. Yet the next day, I was able to eat almost normally.

So I need...what? A neurologist specializing in migraine? Or a GI doctor specializing in motility disorder? And do I go with the hospital system that has the better and more experienced doctors, but only so-so hospital care (where they play keep-away with my pain medication every single time.) Do I go with the system where the doctor aren't experts but the hospital care is great and the doctors and nurses are always willing to listen to my explanation of EDS?

I'm tempted to go with the latter. My horrific experiences in bad hospitals in Chicago and Cleveland left me with PTSD, nightmares and flashbacks brought on by something as innocuous as seeing a medical drama on TV. Just being in a hospital is in itself a highly traumatic experience and I don't want to make it worse by adding doctors and nurses who are being sly by keeping my pain medicine away from me while at the same time acting as if they've done nothing wrong.

This sucks. I haven't been this sick in awhile....

GI Update

2011-11-14T13:49:00.001-08:00

I'm going to update quickly and without much of my usual finesse for time's sake. Well, my GI problems from October continued to get worse until my nausea was so severe I couldn't even get enough water down. I was so miserable, always half dehydrated and feeling like I would dry heave any second. So eventually I got hospitalized twice. The first time I was too dehydrated to get an IV in any of my peripheral veins, so they drilled a central line in my chest. This really hurt.I passed the gastric emptying test, so I was falsely buoyed, thinking the whole thing was an episode that would just blow over. But as soon as I was discharged I went right back to being as sick as before and it only took two days before I was admitted again, to a different hospital.The tentative verdict is chronic migraine. Which I really, really want to be true so my problem can be "what should I eat to gain back ten pounds?" instead of, "how do I keep from accidentally dying of thirst/starvation/electrolyte imbalance?" I have a feeling of deep unrest in my body. Even sitting here now, in my own room, at my familar desk, listening to familiar music. Something feels awry. I'm tired of moving from one crisis to another with EDS. I just want to live.

October

2011-10-20T17:30:00.000-07:00

I love my new rheumatologist. If it were closer to Valentine's Day, I would give her a valentine. She got an MRI of my hinky hip, whereas my last rheumy would only x-ray it and proclaimed it "fine." Yes, the bones in it were fine, and it was not actively dislocated. What it did have was a case of bursitis and peritendinitis. This is my third recurrence of zombie bursitis, right in time for Halloween. Another steroid injection. My rheumy offered to send me to PT, but I politely declined. Until I find a therapist who is familar with EDS, I'm boycotting PT and maintaining myself on thrice weekly pilates. I asked her to send me to OT instead.

As one of the benefits of being under my mother's new insurance, I can get reimubursed at 80% for silver ring splints.
So I've begun buying those, beginning with the EDS splints for my knuckles which have been in terrible pain, especially when the weather turns cold and rainy. The pointer finger on my right hand has been throbbing so bad, I expect to look down and see that it's three times its normal size. I can't wait to put an EDS splint on that bad boy.

One of the things Dr. Francomano told me to do when I saw her last summer was splint my fingers, but I decided to blow that off. Definitely not a mistake I'll make again. By my calculations, I'll need seven splints. After insurance, I'll end up paying $250 total. Not bad at all.

In general, my autonomic dysfunction has always far exceeded the severity of my joint complications, but my joints are making it clear that they want to join the party.

On the autonomic side, my stomach hasn't been working correctly. Every time I try to eat a whole meal it results in hours of nausea and sometimes vomiting and the rest of the time I have no appetite. I've been getting the bulk of my calories from Starbucks coffee. I've tried every OTC product I can think of. It's definitely not constipation, if only because I know nothing is down there. I can't run on caffeine and desperation forever, so I hope my body will hold out until my next appointment. I don't know if it's gastroparesis, that scourge of many an EDSer, but I certainly hope not.

That's what's on my EDS menu for the month of October, in the middle of my favorite season, fall.

This is the view from my bedroom window. A few scattered autumn leaves under a crisp blue sky. As a girl, fall meant new clothes, new shoes, new school supplies and seeing all my old friends. I could look forward to my birthday and my favorite holiday, Halloween.

Nowadays, I just like the coolness and the smell of the air, the shock of orange and red leaves against the sky, the subtle shift of the constellations edging toward winter. Nothing can ruin October.

Me & my Sister

2011-09-30T15:49:00.000-07:00

PSA: This isn't the most positive blog in the EDS world, is it? I suppose that's because I don't talk to anyone else about my feelings about EDS. I grew up in a family where displaying any weakness, whether physical or emotional was highly frowned upon. It didn't matter if you were sick. For that reason, my symptoms often make me feel ashamed, because I am showing weakness. But these feelings are not to be discussed, because to do so is showing emotional weakness. So without this blog, dear readers, I would have had a nervous breakdown ages ago and I thank you for your patience.

On with the show. This is me and my sister, when I was five and she was around a year old, give or take some months. I was really excited to be a big sister, as you can tell by my face.

My sister grew quickly and was taller than me by the time I was 12 and she was 7. As we got older, people often mistook her for the older sister, even though I was older by four and half years! Here we are at my graduation.

That was in May of '09, right before I got really, really sick. I had pushed my body hard to make sure that I would graduate. (I never would have forgiven myself if I didn't graduate.) But I don't look sick! (lol)

My sister and I have a funny, argumentative relationship. I always say, "If we weren't sisters, we could never be friends." It's very true. We usually get into an argument within a day whenever we visit each other. I'm a poor communicator, becoming sullen and silent when slighted. She is brash and frank, seldom diplomatic except when the situation absolutely requires it.

When we were kids, we would physically fight. She would push me down and sit on me, and I would kick her as hard as I could and punch her in the kidneys if I could succeed in knocking her on her stomach. It sounds terrible, but when I think back on it, I just laugh. Those were the kind of girls we were. That was the kind of environment we were raised in. Raised to be tough like boys, we fought like boys too.

But it's also an easy and a frank relationship. I can be more open with my sister than I can with anyone else I know. Nothing requires a qualifier. If I'm prepared to say it she is prepared to hear it, always. My sister thinks I am a close-mouthed, judgmental, repressed, art-fuck. But she loves me. And I love her and her explosive temper.

And I hope she never finds out I wrote this.

Short & Bitter

2011-09-20T14:38:00.000-07:00

I have always subconsciously believed that what my doctors said was true: that my condition wasn't progressive and that as long as I was kept exercising, my POTS would eventually get better. However, three years later, it's clear that this just isn't the case. Every time I look up, my joints are a little looser and autonomic nervous system is a little more deranged. I visited my sister in Delaware for a month and did a lot of thinking while I was there. I've been trying to live the life my doctors have been advertising. The life where physical therapy is keeping my joints stabilized and exercise is keeping my POTS symptoms stable. And that just isn't true. I have to live the life my body is offering me: the one where my joints keep getting looser and more painful and the neurological symptoms get more and more frightening. I don't have to resign myself to that, but if I'm tired of crying myself to sleep every night (and I am) it's time I admitted to myself that this condition is progressing.And I better get with it.

2011-08-26T06:44:00.000-07:00

I began waving to my neighbors. I've always been a little bit shy, though friendly, but in the time since I'd landed back in the southeastern suburbs of Cleveland, I hadn't spoken or waved to any of my neighbors, most of whom were retirees, older men who had seen me grow up. Leave for college. Return for breaks. Leave again. Work for awhile. Leave for grad school. That was supposed to be the big departure, the one I didn't intend to come home from. But no, here I was. So for a long time I didn't wave.

I had just gotten back from an exhausting pain management appointment, one which I woke up late for, then parked at the wrong building. After running to the right building, the doctor was running an hour behind.

So I wasn't happy. But I got what I needed out of the appointment, which was a rescue medication, something for the worst of the pain. Considering my past experiences with the Cleveland Clinic, this is miracle akin to Jesus feeding the masses with two fishes and five loaves.

(I could (and someday will) write an entire series of entries on the Cleveland Clinic. I have had mostly negative experiences there, including two awful experiences and I still have a picture I drew of a plane dropping H-bombs on their main campus.)

I have been very lonely lately and I think I decided somewhere to start making at least casual friends with everyone I see. A lot of people whose POTS symptoms are severe enough that they are homebound have a lot of online friends, but this isn't my style.

Born on the dividing line between Gen X and the Millennials (Hey, I remember when the Berlin Wall came down!) I've always have a healthy distrust of the Internet and as a college senior, did my senior synthesis paper in part on the works of Sherry Turkle who studies the way people relate to each other online. Her latest book is Alone Together, which I think I'd like to own.

In short, I don't think online friendships are all that ideal. On tests I often score as 100% introvert, meaning that other people sap my energy and I go to be alone to recharge. To be honest, when I was not ill I greatly enjoyed my alone time!

But this is the limit of all that.

I Want it to be Autumn

2011-08-08T17:04:00.000-07:00

I'm going to try to post shorter entries more frequently. I hope that will be a schedule I can keep up with, since sitting for long periods is just not feasible anymore and I tend to do better when I can get my complete thought out in one sitting.

I did succeed in getting added to my mother's insurance policy, so next step is to find out the rules for coordination of benefits. If there are things my mother's policy covers that Medicare doesn't, I can submit to them (after getting a denial from Medicare) and have them pay instead. I'm particularly interested in their durable medical equipment benefit which would cover braces and like.

The Mestinon I started taking recently is officially a great help with my slow bowel motility, but much less helpful for my endurance, so the cumulative effect has been weight gain. Not that I couldn't stand to gain, but I'm frustrated at the fact that I'm homebound and more than a little frightened by the fact that I might have hit the "wall" in terms of treatment options. Well, not necessarily in terms of options, but in terms of what my doctor is willing to do.

Adding to this has been the Al Gore summer we've been having. My father had to put an portable air conditioner in my room because the heat was making me so sick. I found that I slept much easier when I stayed cool as well.

For all these reasons and more, I want it to be fall right away.

The Here, The Now

2011-07-15T20:19:00.000-07:00

At AWP where writers from the ivory tower of academia congregate, we would joke that the fiction writers were homely but the poets were striking. We were the poets. As a student working for my college's literary magazine I was granted a free ticket and reimbursement of my travel costs so I jumped at the chance to attend. On a undersold flight to Atlanta I upgraded to first class for $90 and watched the fields go from snow covered to bare to green. It was February and still freezing in Chicago but in Atlanta the trees were flowering.

In my now scrapped five year plan I was due to have a book out by now. Just a chapbook, but still. In reality, I haven't been able to do any writing for some time. Everything I used to write about seems stale and silly now, but to write about what's happening to me now...that wound is too fresh. The only thing to do is wait it out, wait for the bleeding to stop, wait it to scab over.

My negotiations for a new medication were successful. I am now on my second day of Mestinon. One excellent and immediate benefit: farewell to all my bloating, cramping, nausea and constipation. Just like that! I think I might be gaining some endurance too, but it's a bit too soon to tell. In any case, I'm pleased. Also, very thankful. I felt so miserable going into that appointment that there was a surgeon trying to hit on me and I couldn't even reciprocate.

A SURGEON! Trying to HIT ON ME! The healthy me of three years ago would have been engaged to him by now.

I've begun the somewhat agonizing process of finding out whether I qualify to be added as a dependent under my mother's new insurance policy. I'm in the middle of collecting the necessary documentation, but some of it is make me leery. Why do they need the names and address of my former employers for instance? I'm not trying to work for them after all, I just want their juicy benefits.

That sounds kind of grasping, but really, it would mean getting the two cavities I've had since 2006 filled, an eye exam, new contact lenses, trips to the hand therapist and ring splints, and an end to my system of "No, I can't see that doctor this month, because I have to see this doctor." And "Oops, I had to go to the ER so I need to cancel this month's PT."

I was telling my friend J. about this and she asked "What else?"

There was my failed attempt to de-stress, where I went for a walk in the woods behind my house. It was really warm outside, so I wore shorts. Five minutes later, every thorn bush in the woods had lashed me somewhere on my body so I gave up and stumbled back inside, bloody legs and all. I took a picture and was going to inflict it upon you all, but I've decided to let you just imagine. It wasn't relaxing, but it was funny...to everyone else. (Well...I did laugh some, after I patched myself up, but my legs stung so bad!)

Also, I think I want to go to Germany. I don't have a passport, but that can be remedied. I don't have the money, but I can save it. I have a good friend whose parents live in Bad Nauheim, near Frankfurt and said I'd be welcome if I ever came to or through Germany. The plane ride will probably suck.

I will probably go and be sick in my German hosts' guest bedroom for a day or two. But after that, I bet it'd be worth it.

House Arrest

2011-06-19T10:36:00.000-07:00

One day to do the laundry. One day to shower. One day to twist my hair. And then, on the fourth day, she went to Target.

Afterwards, my sister called me but I couldn't talk. Somewhere between the beginning of a sentence and the end, I'd get lost. Even short sentences that only contained two or three ideas. I promised to call her back later with more coherent thoughts.

At my neurology appointment, I tried to convey all that had gone wrong since January, a time when I still had the wherewithal to think about things like painting my room and rehabbing the dresser I'd bought at the Salvation Army. When I'd still had ambitious thoughts like "moving out."

At my appointment, I felt terrible having been upright for so long. My heart had that squiggly feeling it gets around 115 mark. I couldn't shake the feeling that my neuro was more enamored with his new pet theory of EDS as mitochondrial disease to notice the fact that I had gone downhill fast in a matter of months despite having done everything asked and remaining physically active.

The neuro wanted me to try antidepressants but I don't want to. Not because I think he's implying that my problems are all in my head, but because they make me crazy and always have. Worse yet, it's never an immediate reaction. It's slow, as the drug builds up in my system. At first things seem a little brighter, outlines sharper. They hold my attention longer and seem significant in ways I can't explain. And then I start seeing things that aren't there.

I have no desire to add these kind of symptoms to the ones I'm currently feeling. Especially when people tend to throw more psych drugs into the mix rather than withdrawing the offending one and that just makes things worse.

I'll tell you all about my sensitivity to antidepressants and how I learned about it someday when I'm feeling jollier.

So, I'm not taking them. Period. The bad thing is no alternative were presented, so I went home feeling a little defeated, hoping that if nothing got worse I might figure out how to manage in this state.

And then, even in two weeks, things got worse. I've always had trouble with brain fog, but I've never not been able to talk. The most I can manage driving is 30 minutes, maybe 45 and I wouldn't feel comfortable pushing it beyond that. Even then, my reaction times are slower, so I try to keep to the city streets.

In a city that sprawls as much as Cleveland it's a nightmare. Long days spent at home, trapped in the house by the heat make me crazy. I hate stupid tv (although I do have my pet shows) so I read news instead, but then that gets too upsetting. I want to at least pace away my irritation but I'm too exhausted, too light-headed. I'm so weak, the house seems huge. I feel like I'm under house arrest. All I need is one of those ankle monitors.

No Fake Happys

2011-06-05T06:59:00.000-07:00

A lot of people have disclaimers on their blogs about their positive attitudes and no whining zones and etc. You might notice that there are none on this blog. This is not one of those blogs. I allow myself a lot of foul attitude leeway.

However, recently, my attitude has been so foul even I had to stop posting for awhile.

My POTS has gotten worse in hurry in just a matter of weeks. Just sitting here at my desk is giving me the sweats. GI woes that I thought I had seen the last of have resurfaced. I'm mildly nauseated constantly, worse after meals, with cramping and bloating.

And it's been getting slowly and steadily worse. I'm especially angry about it, because I told my rheumatologist way back in April that my legs were tingling and that this, combined with a speckled ANA (mine are typically normal) was a sign that my body was likely chewing on its autonomic nerves again, and that he ought to do something.

Instead he said that lots of people have speckled ANAs and are perfectly fine and sent me home. And there's nothing I can do about it except sit and wait to get sick enough to go to the hospital. It is the worse. kind. of. waiting.

While I'm stewing in my own helplessness, my joints haven't been playing nice either. I did see a new rheumatologist who was kind and knowledgeable and joked with me as I told her my history.

And then she asked, "What can I do for you?"

And for a second I couldn't answer because I'm more used to being told I can't be helped, and there's no treatment and etc. etc. I thought about it while she went to copy my records.

When she came back, I said I wanted her to believe me. And to do what she could for me and to not be dismissive and to take information from me when I gave it.

It seemed to satisfy her, but it made me reflect on just how little there was to be done in the first place and whether my expectations are too high.

Are they?

Managing my expectations has never been my strong suit. I claim to be a realist, but I'm really an optimist. I never expect that my doctors will be cruel and dismissive, even though it's happened before. I never expect to get worse.

But then, what kind of life what I have going around wrapped in negative possibilities all the time?

2011-04-17T20:27:00.000-07:00

It is hard not to despair with this long rash of inadequate doctors.

My father turned 60 earlier this year. He asked me, "What's the treatment plan and what's the prognosis?" I said caustically, "There is no treatment plan. And I don't know the prognosis."

I have obediently done seven rounds of physical therapy. Some aquatic, some on land, some with more emphasis on machines, some with more emphasis on isometrics. Accordingly, I've become quite toned, but no less lax. In fact, my laxity has steadily increased. I get the impression that it would be worse if I was not physically active. But physical activity has by no means stopped it. And it certainly hasn't cured me.

But if I raise my voice even slightly–if I make the slightest complaint about this laxity and the subluxations and pain it causes, suddenly I'm not motivated. I'm not working hard enough. That's it. Just, I'm not trying hard enough, because obvious if I were, I would be fine. Oh, and I'd have a job. I think it's just rich that these doctors think the standard of care they provide is enough for even day to day living, let alone employment.

I mean, if all they intend to do is watch and take notes while EDS steamrolls me then they can let me know so I can stop paying for it! I'm just so sick of it all. I'm sick of them, I'm sick of the disease, I'm sick of myself and my helplessness in the matter.

Another One Bites The Dust

2011-04-07T11:14:00.000-07:00

I think I'm going to need yet another new doctor soon. There was a lot of "you look better" (all while I'm complaining of feeling worse) and suggesting I need to exercise more when I just recently was able to walk again thanks to a doctor who finally took action about the severe bursitis in my hips. The kicker was when he said if I pushed my body it would "rise to the occasion."

"That hasn't been my experience," I said tightly.

I really don't want to have to go all the way to Cincinnati. Despite the fact that it is in Ohio and I would be able to use secondary insurance there, it is too far to drive there and back in a single day; I would have to stay in a hotel. That makes it pretty pricey. But I'm to the point where I'm tired of throwing my money away. My attempts to find a primary doctor in this area have pretty much failed.

NaPoWriMo: Day Two

2011-04-02T20:41:00.000-07:00

I wrote the The Set-Up as rebuttal to the myth of the "Super-Crip" the idea that people with disabilities are brave, inspirational, child-like figures who are ultimately super human and therefore not human. I've been feeling really personally fucking offended (TM) by this stereotype lately but The Set Up isn't so much angry as it as sad. Well, it tries to be angry. You'll see. It is very frank.

The Set-Up

So, tonight I'm having all these

stupid thoughts of how much I want an attic apartment
with birch butcher block counters
and maple cabinets painted white
a deep little sink with a black
backsplash

and two long white shelves with everything (everything!) I need

and a double bed
and a reading corner
and reclaimed wood floors
and a vegetarian diet
maybe a little fish

if I lived humbly like this
and taught children honestly

might I be forgiven enough to walk again?

Because I didn't want much then,
and I want even less now

and I will get down on my
knees believe you me

if it means I don't have to use a wheelchair before I've fallen in love.

you know, spare me from being the set-up to the joke...

so a black, bisexual, liberal, vegetarian, hipster, Christian woman
in a wheelchair
walks into a bar,

says she'll have a Shirley Temple because alcohol doesn't agree with her medication.

I can see the reality before it actually happens, the way I used to be able to see
myself getting a job as I went in for the interview. I know why it's offensive to say

wheelchair0bound. I know what you shouldn't say, what you shouldn't do. I give 15% of my disability check to Haiti, to aids-orphaned children in South Africa, to hungry children here in America.

But all I want is a 40,000 a year job, a one bedroom in Oak Park and to bang that professor I never got a chance to in grad school.

NaPoWriMo: Day One

2011-04-01T21:30:00.000-07:00

For the first year ever, I'd decided to take part in NaPoWriMo which is briefly, the poet's NaNoWriMo. Instead of trying to write a novel in a month, one writes a poem a day.

As such the poems will be rough around the edges. They are not my best work, though they do typify my tone and style. One of my favorite poets is Kenji Miyazawa, a Japanese poet who live in the early part of last century in a part of Japan called Iwate, which was heavily damaged in the recent earthquake and tsunami.

I was thinking a lot about Kenji and how saddened he would be to see the people of his beloved Iwate suffering so. He was the oldest son of a moneylender during a time of famine and made his living as a teacher and geologist. Despite having plenty of money, his heart ached to see his students suffer; he couldn't bring himself to enjoy the trappings of his lifestyle. He chose to live simply.

Toshiko was his younger sister. She too wanted to be a teacher, but contracted tuberculosis. Her mother and brother nursed her dutifully but she sickened and died. Her death affected Kenji deeply. He mourned her openly at a time when women were valued less than men. She surfaced many times in his poems.

Before the days ends
you will be far away, my sister.
Outside, there's sleet and it's bright.
(Bring me some snow, Kenji)
From clouds the color of bismuth,
the sleet comes down....

Kenji endured a lot of personal tragedy in his brief life: the perennial misunderstanding of his father, the deaths of his sister and his wife, the distrust of the farmers who were the parents of his students. The latter would take a little more time to explain than I want to spare.

Mostly, this is a lot of talk for not that good of a poem.

The Gold at Sunset

Kenji, why don't you eat some food

God will never forgive you

and you will never see Toshiko in any heaven, Kenji
if you don't take my hand right now

let's go moon-seeing
let's go flower-watching

Kenji, don't you miss the croaking of the summer frogs
and the bridge of the milky way?

Kenji, come out into the gold at sunset
and whisper it into the sky
many, many times.

Suffering's lesson is this.

Moody McMoods and Sicky McSicks

2011-03-30T18:10:00.000-07:00

I've had a real case of the springtime grumps. I've been really, really lonely and isolated with just my cats for company and I haven't had much spare energy for "social networking."

Frankly, I was never really outgoing at the best of times, preferring a few besties and lot of acquaintances but now I find myself sitting in coffee shops and ice cream parlors and watching people coming and going and talking with each other and remembering the times I used to sit and drink coffee and eat ice cream with my friends.

And frankly I'm a little worried about myself, like I might be a step away from being one of those people who mails anthrax to elementary schools or something. (Well, maybe not that bad.)

But generally, despite being stand-offish, pedantic and condescending I need to make friends, or at a minimum to open my mouth and speak the English language to someone capable of reciprocating.

And on top of all that, all is not quiet on the medical front. The first clue was when I stopped sleeping as well. I really, really rely on sleep as someone who deals with a lot of pain. Lately I've had a really hard time falling asleep and I've been waking up with less than my usual eight and a half hours.

Then there's my blood pressure. Since I got my POTS meds right, my blood pressure hovers around 100-110 systolic, very seldom higher unless I'm in the extremes of pain.

But yesterday I woke up feeling that special kind of crap and my blood pressure at the doctor's office was 86/51. At that low I have a really hard time following directions and understand what's being said to me. The nurse asked me to follow her into the bathroom to warm my hands under the tap so she could get a good vein and I stood up, took two steps and forgot what I was doing.

I was going to drive back, since this doctor was a long drive but my mom took the keys. Probably a good idea.

Most worrying of all, my GI tract. It was never well behaved, honestly, but right now the only thing reliable is my swallow reflex. The OTC drugs and prescriptions that usually work well aren't working at all.

So I've been losing weight and feeling miserable: bloated, constipated, and periodically wracked with those cramps that you get when you get food poisoning and your body tries to expel everything in under 10 minutes. Only nothing comes out!

I'm worried that it means nothing good, so I've been trying to get in with my GI doc.

On the lonely positive front, I finally found a pain management doctor who is a human being and thinks that I am one too. We'll call him Dr. B. henceforth.

I also started writing poems. For the first time in nearly two years. It was like a dam breaking. I just started writing again. Finally!

The Middle Ground

2011-02-27T14:51:00.000-08:00

Urgent Care, of course. And after several days of Omnicef, I'm already feeling better, although very slowly, probably due to how long I let the infection drag on. Turns out my swollen nasal passages were refusing to let my infected sinuses drain, hence the headaches from hell. And the infection kept on, because it had no place to go. So I also have some steroid nasal spray to keep the swelling down.

So that's that then.

I have lot else on my mind that hasn't quite made it into words yet. Please look forward to it.

Wellness or Sepsis?

2011-02-21T10:07:00.000-08:00

Over the past two weeks, I'd been getting sudden awful headaches that I described as "the side of my head being torn open." They were impossible to manage. When one struck when I was driving I almost drove off the highway twice, so I had to exit. And then I pulled into a plaza and then I turned off the engine and clambered into the back seat and rolled into the fetal position. And then it lifted some amount of time later and I drove home.

Later, my mother asked, "What'd you do to yourself?" I was getting dressed for bed. Up and down the length of both arms were angry red trails of torn skin and half-moons filled with dried blood. "I scratched myself up...I guess." I said weakly. I didn't mean to, per se. The pain was just that bad. Piggybacking on my usual under-medicated 6/10 these headaches were so bad I just unknowingly scratched the hell out of myself.

I managed to get in to see a dentist, but the pain isn't from a bad tooth or an abscess like I suspected. So what is causing this fever, malaise, splitting headache, loss of appetite....?

I must be sick with something else. For the first time in several years, I'm sick on top of sick. What could it be? A sinus infection? That's the only other thing I can think of that would cause both a fever and such a severe headache. It's not meningitis because...meningitis is not so polite as to give her victims two weeks. That's not how she rolls.

I have to say, I'm not liking it. As to doing something about it, my primary care doctor is a jewel. She is such a jewel that she doesn't have any openings, even for emergencies until March. The secretary recommended I go to one of those drugstore clinics, but you have to pay up front for those, and I'm tapped out from seeing the dentist!

So my choices are to get better or to get so sick I have to go to the emergency room.

Wellness or sepsis. Essentially.

Pray for me, y'all.

If you have a third option, please leave it in the comments, thanks.

Spring is Coming

2011-02-06T14:40:00.000-08:00

Spring always comes late in Cleveland, usually after winter gives up in early April, blanketing us in one last layer of snow up through which the crocuses and tulips are popping.

The quality of the care of the doctors I have seen has greatly increased. Incredible bedside manners, genuine compassion. Most are very good at what they do.

None of them knows more about EDS than I do and none of them know where to begin. Has anyone out there had to train their doctor? It's troublesome, because I don't really know. I am deeply, deeply acquainted with my disorder and my knowledge, wedded to my natural intuition extends a great distance.

But I'm not a doctor. Just a girl who grew and went to art school with the aim of writing a few above average books and teaching her passion to kids. Not...whatever it is I'm doing now.

Resizing the ring splint for my right index finger. Again. Waiting for my Walk-Easy crutches to come in, having come to conclusion that...I can't walk farther than a 1/2 mile.

January sucked. I want to make February better if I can. Some people (who may well be right) have suggested dropping everything and outsourcing my care to nearest EDS metropolis; in my case, this would be Cincinnati. A long and tiresome drive down I-71 to be sure, but, doable, and as an added bonus, still in the state of Ohio and thus covered by Ohio's insurance for folks like me currently under the heel of life.

And maybe a step toward turning things around.

OT: A- PT: C

2011-01-21T19:25:00.000-08:00

"I can tell you're a strong person," K. said. I smiled. It felt like the first genuine smile that had crossed my face in days. During PT I'm mostly quiet. I like B. and L. (my therapists) they're both really nice people, but the shadow of failure always seems to be hovering above me.

I do the exercises religiously, even when I don't feel like it. But last weekend, as I got ready for bed, my right hip just seemed to fall out of its socket. Not a dislocation, just a sublux, but a very painful one. The larger the joint, I find, the more painful it is for it to be out of place, even slightly.

Usually I can correct a sublux easily, but I was having trouble that day, so much so that the muscles around the hip went into spasm and I started crying and yelling and banged on the wall for my parents' help. My mother kept suggesting different positions and I went through them, pulling my knee in towards my chest, then pulling it towards my other leg, then outward. At some point it finally went back in and I sighed with relief.

And then I felt embarrassed. I had always been able to reduce my own luxations, even as a child who didn't understand what was happening to her. The fact that I couldn't this time scared me. But as always, I didn't want to face the fear just then, so I crammed it into the back of my mind.

My mother was telling me about hip exercises and I snapped at her. "Are you saying this is my fault?!"

She said no, very calmly. My younger sister has had an explosive temper since childhood, so she's used to the occasional blow-up.

She asked me to feel her hip muscles. I did. They were firm. I touched mine. They were soft and gooshy. No wonder she didn't have these problems. I felt scared again and quickly substituted that feeling with shame. I'll just have to work harder, try to build myself up.

This is, what, my fifth round of PT?

If what Dr. Tinkle says is true than the hormonal treatment I take for my endometriosis is affecting my ability to synthesize collagen at the molecular level. And trying to fight back against it seems not to be working.

If I want my PT to "take" I think I need to go on a different treatment. But I can't get my gyno to listen to me. Eff him, I'm going back to the old one. And he subluxed my hip during the operation (I was in stirrups) and when a nurse tried to tell him he just waved her off and walked away. God, that surgery sucked.

And the next doctor who tells me to go to therapy for pain is going to get asked if they'll pay the co-insurance.

My hips are in terrible shape. Such shape that I've been homebound for most the month of January, save doctors' appointments and a jaunt to Pittsburgh to crash their EDS support group. So the next time I see the doctor I'm going to ask very firmly for a prescription for forearm crutches so I can walk around again.

I get very sad when I can't go out.

He better say yes.

My first ring splint arrived, but I think the measurement is little large at the distal end. I only need to splint my fingertip joints (the DIP) the middle joints (PIP) are stable. But apparently these fingertip splints are prone to coming off unless they are a little snug.

So I need to do an exchange, work the postage into next month's budget. Even though it was ill-fitting, I was excited to see it. I promptly started pushing every button in the house: the microwave, the dishwasher, the icemaker, the thermostat. It was delightful not to feel the joint collapse and the accompanying pain.

K. urged me to do whatever I could to spread the word about EDS.

I asked my mom what she thought of a bikini car wash fundraiser come spring. She said I'd hurt my shoulders.

I'll take that as a 'yes.'

"And when I look into the future I see danger in its eyes"

2011-01-07T17:01:00.000-08:00

2010. The year I took it up the rear end from so many doctors, I should have been the one getting paid.

How I learned to see doctors as a cabal of siblings and half-siblings, some of whom know the others are rotten to the core but refuse to acknowledge it, at least to people outside the 'family.' Oh, and psychiatrists are the redheads.

My mother is in her early 50s. She is developing POTS. I worry about my sister as well and I hope that she is not affected as I am, that she can go further in life and like I aspired to, make every dream come true.

How can I give up on this wonderful gift, my one and only life? To me the stages of grief and loss feel like hanging onto the edge of the sheer cliff. Anything to get back to the way things used to be. Hauling myself up as hard as I can, I see footsteps of friends going about their daily lives. They can't see me and I can't see their faces. We're strangers again.

Acceptance would be realizing the side of the cliff is itself solid ground. Just a different sort of solid ground, meant to be traveled in another direction and in a different way.

In OT I held a pen "correctly" for the first time in my life, thanks to a sample ring splint designed to hold my the joint at the tip of my finger in place. I had an image of myself, staying in morning and afternoon recesses in the second grade, practicing cursive Ks and Qs, my hand aching mercilessly. Being made to write phrases over and over for punishment and then having to do it again when my writing became illegible.

None of that had to happen. I had actually started to believe it myself: that I was willful, stubborn and flaky.

I wrote my name over and over again on the yellow Post-It K. passed to me.

Yvette

Yvette

Yvette

Yvette

Maybe some comfort for that little girl with the sore hand.

As a rule, I never make more than 2 resolutions for the new year. This is what I find I can keep up with.

But I find myself at a loss for what to resolve. I started with finishing my manuscript. That was easy enough. But what else? There are things I need to do, like file bankruptcy, but what sort of resolution is that?

Because it began to snow today, I am in bed. I am hoping the drug store is not feeling judgy today and will fill my out-of-state pain prescription...which wouldn't have to be out-of-state if I just had a treating doctor with a listening ear, an open mind and a compassionate heart.

Like my new primary. She had been my grandmother's doctor and I remembered her kindness. And to my surprise, she is familiar with EDS AND connective tissue disorders. She used to work in a research clinic and has seen her fair share of both.

She asked if there was anything I needed right away and I said "No..."

I meant yes, but I was afraid. When I meet a doctor now, my essential emotion is fear. Carefully disguised fear.

I just can't seem to help it.

The thing that went wrong during my surgery was I started bleeding and wouldn't stop. I'm still bleeding. Not a gush, but a slow leak, like having a period that just won't stop. My doctor is dragging his heels about it, and I'm feeling more lethargic by the day. How can I not be afraid. He offered to destroy my uterine lining (which would sterilize me) and I said no. Then he acted a bit as if I were being unreasonable. But I'm thirty not fifty and as much as I don't want to pass my fantastic genes to my children, I'm not prepared to scorch the earth just yet.

He said, "Well, we have to stop the bleeding." I said, "Yes we do."

And then, he told me to have my blood drawn so we could keep an eye on my dropping hemoglobin and take action when the time comes.

I had such a wonderful holiday with my sister too, seeing Cirque du Soleil, eating Chinese, shopping the after Christmas sales and drinking a good four bottles of champagne.

I kind of hate that this is hanging over my head at the moment. It's always something.

But I'm not done with this life yet. I'll make something of everything yet.

For I will consider my cat, Lysander.

2010-12-16T21:29:00.000-08:00

The less said about my surgery the better. The procedure itself went fine, but something I had been dreading happened when I woke up...and I don't want to talk about it just yet. Maybe in a bit. I really appreciate all the support I got from everyone, including some folks I hadn't heard from in a bit. That makes me feel good.

I'm going to look forward for the moment, toward my trip to Delaware to see my younger sister. Another friend of hers is being visited by her sister, so we are going to go on "sister dates." I can't WAIT to do this.

With my pain and the weather, it's been awhile since I had the company of anyone besides family and my cat Sandy (Lysander, actually, but try yelling that). In fact, I have spent so much time with my cat, that while I am not the cat whisperer, I am certainly my cat's whisperer. How well I understand his personality, within the limitations of his cat's mind! How I have come to understand cat-ness, and feline wishes and desires, what he fears and what compels him.

It's kind of fascinating, scary, sad and hilarious all in one.

So without further ado, I present the only note this post could possibly end with, 'For I will consider my Cat Jeoffry' from Jubilate Agno. An opus by one Christopher Smart, who may or may not have been "mad" but in any case spent years in confinement with only his cat Jeoffry for company.

For I will consider my Cat Jeoffry.

For he is the servant of the Living God, duly and daily serving him.

For at the first glance of the glory of God in the East he worships in his way.

For is this done by wreathing his body seven times round with elegant quickness.

For then he leaps up to catch the musk, which is the blessing of God upon his prayer.

For he rolls upon prank to work it in.

For having done duty and received blessing he begins to consider himself.

For this he performs in ten degrees.

For first he looks upon his forepaws to see if they are clean.

For secondly he kicks up behind to clear away there.

For thirdly he works it upon stretch with the forepaws extended.

For fourthly he sharpens his paws by wood.

For fifthly he washes himself.

For sixthly he rolls upon wash.

For seventhly he fleas himself, that he may not be interrupted upon the beat.

For eighthly he rubs himself against a post.

For ninthly he looks up for his instructions.

For tenthly he goes in quest of food.

For having considered God and himself he will consider his neighbor.

For if he meets another cat he will kiss her in kindness.

For when he takes his prey he plays with it to give it a chance.

For one mouse in seven escapes by his dallying.

For when his day's work is done his business more properly begins.

For he keeps the Lord's watch in the night against the adversary.

For he counteracts the powers of darkness by his electrical skin and glaring eyes.

For he counteracts the Devil, who is death, by brisking about the life.

For in his morning orisons he loves the sun and the sun loves him.

For he is of the tribe of Tiger.

For the Cherub Cat is a term of the Angel Tiger.

For he has the subtlety and hissing of a serpent, which in goodness he suppresses.

For he will not do destruction if he is well-fed, neither will he spit without provocation.

For he purrs in thankfulness when God tells him he's a good Cat.

For he is an instrument for the children to learn benevolence upon.

For every house is incomplete without him, and a blessing is lacking in the spirit.

For the Lord commanded Moses concerning the cats at the departure of the Children of Israel from Egypt.

For every family had one cat at least in the bag.

For the English Cats are the best in Europe.

For he is the cleanest in the use of his forepaws of any quadruped.

For the dexterity of his defense is an instance of the love of God to him exceedingly.

For he is the quickest to his mark of any creature.

For he is tenacious of his point.

For he is a mixture of gravity and waggery.

For he knows that God is his Saviour.

For there is nothing sweeter than his peace when at rest.

For there is nothing brisker than his life when in motion.

For he is of the Lord's poor, and so indeed is he called by benevolence perpetually—Poor Jeoffry! poor Jeoffry! the rat has bit thy throat.

For I bless the name of the Lord Jesus that Jeoffry is better.

For the divine spirit comes about his body to sustain it in complete cat.

For his tongue is exceeding pure so that it has in purity what it wants in music.

For he is docile and can learn certain things.

For he can sit up with gravity, which is patience upon approbation.

For he can fetch and carry, which is patience in employment.

For he can jump over a stick, which is patience upon proof positive.

For he can spraggle upon waggle at the word of command.

For he can jump from an eminence into his master's bosom.

For he can catch the cork and toss it again.

For he is hated by the hypocrite and miser.

For the former is afraid of detection.

For the latter refuses the charge.

For he camels his back to bear the first notion of business.

For he is good to think on, if a man would express himself neatly.

For he made a great figure in Egypt for his signal services.

For he killed the Icneumon rat, very pernicious by land.

For his ears are so acute that they sting again.

For from this proceeds the passing quickness of his attention.

For by stroking of him I have found out electricity.

For I perceived God's light about him both wax and fire.

For the electrical fire is the spiritual substance which God sends from heaven to sustain the bodies both of man and beast.

For God has blessed him in the variety of his movements.

For, though he cannot fly, he is an excellent clamberer.

For his motions upon the face of the earth are more than any other quadruped.

For he can tread to all the measures upon the music.

For he can swim for life.

For he can creep.

I will not cry at OT...I will not cry at OT....

2010-12-13T21:41:00.000-08:00

Now that winter has remembered herself, she's struck us with a vengeance. Most of the schools were canceled, the roads are in terrible shape and the temperature even colder than usual. My room is right above the garage and the floors are wood, so brrrrr.

OT is wonderful and I have high hopes for PT as well. My OT, K. gave me the most wonderful splint for my thumb. It feels so good to wear, that I practically reach for it along with my glasses in the morning. It feels excellent to drive in, especially. I was so used to enduring the pain that came every time I made a turn.

So used to enduring a lot. I almost cried when K. didn't question me, didn't accuse me of exaggerating my pain or the things that have happened to me.

She just listened to my doctor (Francomano, in this case) and evaluated me for the splints I needed. I almost cried. "No one's ever tried to help me like this before," I said. In fact, my doctors rarely said the name of my diagnosis to me and I'm positive that a good percentage of them didn't think I had it, or if they did think I had it, didn't think that fact constituted anything significant.

To some of them, I was like a welfare mom, only minus the welfare and...minus any kids. I was a drain on their time and their resources and I should really just excuse myself from their venerated presence so they could get on with the business of helping people who actually needed it.

Can I interest you in another run-on sentence? No? All right.

The emergency appointment I had with a rheumatologist (who as I dreaded, was really an "immunologist") was a little more trying. He wanted to learn about EDS, but wouldn't take a single journal article or brochure from the EDNF. He couldn't believe that someone might need lifelong pain management from EDS. He didn't even know that it was autosomal dominant based on the complete surprise he exhibited when my mother walked in ("You have it too?!").

It reminded me of the doctors' appointments when I was small and trying to convince the pediatrician that my knee had dislocated, without knowing the word 'dislocation'. I was seven or so. I only knew to indicate the place where my kneecap would migrate to (the side of the leg.)

The feeling of being my body's 'unreliable narrator.' Nothing I say is necessarily true.

Moving my fingers. "You're not that hypermobile." Versus Dr. Francomano's "These are very hypermobile fingers. Exceptionally so."

Does the arrogance never cease? This man and his three-minute-old opinion versus a doctor who's made this her veritable life's work. I should feel gratified that he's at least trying to learn, but after months of mistreatment rather than more inclined to settle for anything I am even more weary of delays.

EDS is not being patient while doctors educate themselves. EDS does not cease to exist when it is not acknowledged and it does not wait until the light of human understanding falls upon it to wreck my body.

I have been working to tolerate increasing amounts of pain the way you try to close the door on the closet that is filled to bursting. A thousand and one diversions and I try not to notice that I only leave the house for doctor's appointments and 'hanging out with friends' or even 'sitting quietly at the coffee shop' seems distant and unlikely.

I hope it's like a wave the blows over soon and these things will become natural to me again. I haven't given up; I'm still waiting to do them. I'm still waiting to do it all.

I'd burn them if they weren't so expensive

2010-12-02T16:23:00.000-08:00

I was going to just go and have my records sent to my new doctors. My mother suggested I go get them myself since I had some new appointments coming up very soon.

We went together to pick up the records. I let her handle the exchange. It was $25 for 10 pages.

I read her notes once we got back to the car. I reclined my seat, as I often do after a long day.

I read the notes carefully. We arrived home. My mother closed the garage door and got out, going into the house. I didn't move. She left. The lights cut out so I fumbled and turned the car light on to read the last few page.

What I learned was this. The doctor who I asked to be my pcp while I was in the hospital with dysautonomia symptoms, the doctor I chose because she was Black and a woman like me, never believed me.

She never believed me.

Always in her notes, she writes my primary diagnosis as depression, secondary diagnosis as chronic pain syndrome. Later her notes turn irate as she says that I complain of "multiple non-specific symptoms" After my trip to Philadelphia, where I was prescribed a knee brace she humorously notes "pt wearing brace on left knee subjective complaints of multiple jt (joint) pain, no objective findings." Again I complain of "non specific symptoms." These symptoms were the vertigo, double vision and unsteadiness brought on by my migraines.

In assessment and plan she diagnoses me with depression again, this time with possible "hypochondriasis." She also notes that I've been "doctor shopping." Wow. And all the way to the east coast. You'd almost think I was desperate or something.

In my last entry, I said that the fact that I had EDS seemed to be missing from discussions I had with my doctor and her staff.

Well, I was right. Either she never read the reports she received from the geneticists or she gravely misinterpreted them. It was around the holidays, this time last year, maybe she just skimmed that shit like an unwanted catalog.

Mostly, I'm angry at myself for not knowing how phony she was being all this time. I'd seen signs before, in the way she dealt with other patients, in the flippant manner during our appointments, but I didn't want to believe she'd deal with me in such a way.

I don't intend to show these records to a single other doctor. If a doctor insists on requesting them, I'll have to inform them that the contents are so naive and misguided as to be almost libelous.

I'm just glad that she's not my doctor anymore so I'm not wasting my limited funds on being strung along politely in public and maligned in private.

I didn't shed a tear, but my chest felt tight. I tried to shed the feeling of being betrayed. As I sat, reading, trying to clear my mind, the concrete (but again peripheral) feeling came over me that all this feeling of betrayal and wrongdoing would one day be replaced by love. A new love, strong and comforting, the exact opposite of the way I presently felt and thus, its nullifier.

Someday is good enough.

Metaphor

2010-11-29T23:24:00.000-08:00

Disclaimer: Forgive this sloppy post. I've been struggling lately, so there are probably misspellings and things that might not make sense. Kanji are Chinese characters, common to both Chinese and Japanese.

I told my subconscious firmly that I was bored with my dreams. I was bored of what they meant. I was tired of the train stations with the trains that had a destination for everyone but me.

You can't get there, my dreams say. You can't get there from where you are.

I say shut up. Stupid, boring, agonizing dreams. I know what they mean. But in my unknowing, dreaming mind I still sprint for the plane I know I will miss. I endure Herculean tasks. Riddles, problems that can't be solved. The woman at the ticket counter hands me a pen and demands I write the kanji* for bell.

Damning, because I used to know it.

I KNOW I CAN'T GO BACK.
OKAY?
I KNOW.

Now dream of something else.

Dream of the Orchard.

The Orchard is not a dream. It's not quite an idea either. It's an intrusive little whisper in my mind.

Part of me is in an orchard that goes on forever. It is all seasons simutaneously there. The tree bear both fruit and flowers, while dead brown leaves carpet the ground and snowflakes fall from the sky.

Part of me is trying to get to the orchard. I feel traces of it. Absolutely concrete and absolutely vanishing, as if in my peripheral, the moment I try to focus my thoughts on it it disappears.

It reminds of stargazing, how I'd always have to look for certain stars out of the corner of my eye, because I couldn't perceive them looking dead-on. I'd be looking a patch of black sky, but in my peripheral, I'd be counting the stars of the Pleiades.

From the orchard I get a whiff off flowers, a gust of cold air, the sudden crunch of leaves underfoot. And then it vanishes.

When ideas are too big for my mind, they present as metaphor.

My torturous nine days in a Chicago hospital about a mile from where I lived are discussed metaphorically as an imaginary film starring Kim Novak. You could never guess that the two are the same experience. But that isn't always the point of the metaphor.

Doctor-less, I'm tempted to give up. No one will see me any sooner without a referral from a doctor. In anger, my mother called my former doctor. "She has been discharged from this practice," the secretary says firmly.

The central fact which is that I have a degenerative connective tissue disease, seems to be merely circumstantial to these arguments. It is not the crucial or central in any way to the discussion.

I went to urgent care because I knew I could get crutches and splints from them. I did this because I didn't have a doctor to write a script for them, and lacked the money to pay for them in full.

The pain is always there. Like a static. It occasionally rises in volume, dampening the world with its insistence. I do everything I can to avoid giving into it, becoming tired, irate, spiritless.

I feel I'm merely existing almost. I can't cook for myself at all. Can't do my own laundry. Can't stay on my feet for long enough. My hips click and jam and balk when forced to carry my weight.

I call another doctor and beg, trying to keep the tears out of my voice, but after I hang up, I punch the wall (when's the last I did that? junior high?) and start sobbing in anger.

My mother kneels beside me and hugs me. I try to wriggle away but I'm not strong enough. I'm not stronger than my own mother.

I really despise this body most times.

I got over my case of the 'if onlys' a while ago.

I just hate the way I talk to a friend and the friend tells me I can do all these great things and I just have a mental block.

And I lap it all up and think, totally!

My body reminds me that going out on brunch dates with old school pals is the exception. Being in pain and struggling up the stairs in my own house is the rule. And the new trick thumb on my left hand that led to me spilling hot chocolate all over the floor. This body ("I" had no intention of spilling anything) never tires of dropping and spilling things.

Rubbing Voltaren gel into my hands like lotion before and after typing. Forget writing longhand. I see a form and want to die inside.

The pain soaks my energy right up, like a sponge. I want to sleep forever, trying to get away from it. Even though I know it will make me look suspicious, I can't stand to the look the doctor at the urgent care in the eye, because if I see her face I will know whether or not she believes me.

For J.

2010-11-21T10:36:00.000-08:00

Really I'm just afraid. Afraid of failure. I don't trust my body and I don't trust my mind. When I say "I hate..." I really mean "I fear..."

I have a degenerative disease and no medical support. I've had such awful things happen to me in a hospital that no one even believes them. Actually, most of my doctors have been bad ones. That's the truth. I've had two doctors I've seen whom I would call 'excellent.' And three that I would call 'very good.' Of those, two are in state and one is accessible.

One says that my weird group of symptoms is migraines, the other says that it is atlanto-axial hypermobility leading to impingement of my cranial nerves and I should see a neurosurgeon.

But I have to digest this somehow. I just have to. And call the Board of Education on Monday and ask them how I can start subbing. My resumé is up to date and everything. With a terminal degree such as I have, I could teach full-time, without the need for licensure, provided the school is willing to hire me.

I don't know whether my head is coming off my neck or whatever. I really do need something done about my hips, even if it's just a proper set of crutches. And my left thumb is coming off the rest of my hand.

But I'm sure I can keep the third graders company until their regular teacher comes back.

& some good news too

2010-11-18T17:37:00.000-08:00

I think I'm down to the point where I only owe two people e-mails and one person a phone call.

We don't use words very often in my family. My father doesn't comfort me, or hug me or says he loves me. Instead he'll do my laundry. Knock on my door in the morning. Open my bedside drawer and drop the Voltaren gel on the bed. Walk ahead of me so I don't fall down the stairs (why have I been almost falling and falling down the stairs so often?)

When I can't get out of bed my mother will come to my room and sit at my desk and work. She is more forthcoming with words, but even so, I prefer her silences. Her quiet comfort and that invisible but fully tangible bond between mother and daughter.

I could tell she'd been thinking it and I told her firmly that I did not blame her for giving me EDS.

I was in the mirror yesterday morning, crying quietly as I combed and flat ironed my hair, because it hurt my shoulder blades so.

Does this count, I wondered, as coping well? As not letting myself be controlled by the pain? If I don't stop what I'm doing, if I don't even slow down, if all I do is let these tears roll down my face, then you can't say I'm being 'controlled' by the pain, can you?

Yesterday when I met with D. I found out there was a place to get ring splints in Cleveland. And I could call and see if they would honor the script Dr. Francomano wrote. And there was a possibility insurance might cover the therapy, if the therapist could show it was necessary, which it is.

I felt a little hope and with it a little apprehension. Giving up is easy. Hoping is hard. Could my new PCP be willing to read a little about my illness? Would she fill out the handicapped placard forms? Would she make the proper referrals? Would she care about me?

Would someone finally write a script for a pair of gotdamned forearm crutches so I don't have to drag myself around my own house?

I used to be so, so strong. I could lift bench 90 lbs and squat 220. Now my body is turning into boiled chicken. I had to brush my teeth folded over the vanity because my hips wouldn't hold the weight of even my upper body. It was incomprehensible to the scientific me how any doctor did not think this was a problem.

My old doctor won't release her records to me, only to another doctor which makes me paranoid that there's something negative written about me. As such, I'll simply leave her notes out and settle for my specialists' notes, which contain summaries of all the important stuff anyway.

The good news is that I was informed that one of my poems 'I Picture Kim Novak' will be published this spring. All let you know all the information in a bit. That made me really happy.

Being in pain is like waking up on on the wrong side of the bed every day

2010-11-15T12:44:00.000-08:00

When I'm in pain, I have an unfortunate habit of being short-tempered with people. Even people who are just trying to help. I feel badly about this, but I just can't seem to stop. Being in bad pain puts me in such a mood that I just tell people to stay away.

I spent the last couple of days in bed because my hips wouldn't hold my weight. My dad got my sister's crutches from when she sprained her ankle in the third grade (I was for once grateful for their hoarding-like tendencies.) I adjusted them for my height (she was 5'6, even back then) and used them to get to the bathroom and back, painfully and awkwardly.

I got a letter in the mail from the Clinic stating that my test for vascular type was negative (as I expected it would be) and as such the only plan of action she had was to call a rheumatologist's office who'd previously refused to see me and try to get me in.

A word to the wise: if you have EDS and it is not vascular, don't waste your time or money at the Cleveland Clinic.

I'm trying to decide if I should call my other geneticist and see if she can recommend any other doctors. Part of me just thinks I would sound pathetic and probably get referred to a psychologist. AGAIN.

Four Months of This?!

2010-11-11T19:15:00.000-08:00

My personality changes when I'm in pain.

"I'm tired," I told my mother on my way to my hematology appointment. "I want to give up." Suffering a serious case of doctor fatigue and fatigue in my life in general. A tiredness that goes much deeper than the tiredness of the body or the mind.

I shuffle through business cards, phone numbers jotted on notebook paper. An acupuncturist that someone "swears by." Choose carefully. Some aren't going to pan out. Some will be ignorant, some insulting. Really, the only cure for this is experience or if not a wide-open mind.

The holidays are coming up and they've already begun scheduling clear into January and February of next year, which means I get to spend Christmas with inferior pain management.

Without a PCP or treating doctor I can forget about pain management referrals and likewise for physical therapy or occupational therapy. And of course the handicap placard that started it all.

The idea actually occurred to me to try to purposely dislocate my left shoulder and hope they'd treat me with pain relievers at the ER. Or throw myself down the stairs?

These are the kinds of things that go through your mind when you can't sleep for pain.

This Damned Republic

2010-11-01T21:40:00.000-07:00

"Diderot writes that the word is not the thing, but a flash in whose light we
perceive the thing..."

Sarah Manguso, "Address to Winnie in Paris"

So writes my sister in the craft, Sarah Manguso. She also wrote a memoir of being ill with CIDP and her state of mind during its constant relapses and remissions and the trying out of different medicines and doctors.

I'm selling it short. The book, The Two Kinds of Decay is really something you should read. It is one of the best memoirs of illness I've read yet, having established the fact that illness memoir isn't the story of the illness, but the person we become in the process.

Before I got sick, I could feel the light of the future falling on my face.

But a voice inside of me whispered that I was about to be undone. The weather was going to change. I was going to change. Everything was going to change.

This came to pass.

Most of my doctors, I find, are unconcerned with whether I can do my iADLs. I recently discovered the term for this. Your ADLs (activities of daily living) are things like feeding yourself, whereas an i(nstrumental) ADL is cooking for yourself.

I want to be able to do my iADLs, so that one day when my parents are gone, I will be able to take care of myself. Because I am 30 and Black and both my parents are Black, this day may be nearer than one would suppose.

My day shouldn't be...it can't be dictated by whether I am first or third in line at the grocery store checkout.

Yet when I try to get something that would ease my difficulty in doing my iADLs (a handicapped placard for instance) I get nothing but trouble. And now, because of that little tiff, I don't have a primary care doctor at all.

I swear, doctors act like little spoiled-ass brats sometimes. If they were my children, I would make them all go cut their own switches, beat them and then make them sit in a chair facing a blank wall for thirty minutes.

In other news, tomorrow is election day which I am going to participate in, even though I hate it. For one office, my choices are the Democrat associated with thoroughly corrupt local politicians, the Republican who wants to repeal the Obama Health Care Bill in its entirety and a Libertarian who doesn't seem to be with us on the planet Earth.

I don't want to vote not because I'm apathetic, but because I actually care. I don't want to put any of these jackasses into office! There are a few I wouldn't elect to be night manager at Super Target.

I'm also kind of worried about bumping into someone I know at the voting booths. I still am very shy of people who aren't family – an effect of having been so badly mistreated in the past year. I'm hyper-aware. The feeling I would only get around people when I was walking home alone by myself late at night is the feeling I have around people all the time now.

A constant wariness. Now, bearing in mind I was never the most warm and forthcoming person to begin with. This just heightens in my mind the need to see a therapist although I cannot afford one, the same way I cannot afford wrist splints or ring splints or even my compression hose. Things are so tight around here I'm even paying a portion of the utilities.

On the plus side, I am becoming a master thrifter.

Thrifted, right down to the necklace which I found in one of the drawers of my thrifted dresser.

I'm still hoping to start a petite fashion blog, with an angle of petite fashion, disability-chic-totally cheap-I'm covering up my knee brace today.

Most petite bloggers are far tinier than me, on the order of three sizes, which when you're just a couple inches over five feet is a lot. They also seem to have jobs and shop at places like J.Crew or at least Ann Taylor.

I don't think any of the places I can afford to shop even carry petite sizing and I get really excited when I see a sweater I like and there aren't any moth holes in it.

The Queen Constellation

2010-10-30T17:05:00.000-07:00

My dad called me on my catastrophizing this morning. I was irritable and tired, but having trouble sleeping–still going through withdrawal, having failed to find a doctor who was willing to treat my EDS.

"Why do you always talk about such dark futures?" he asked.
"I just want to be prepared for the worst," I said defensively.

"Why don't you just do what you can do? You're a writer, so write!"

He's right of course. And I have been writing in between all the complaining. My poems have been rejected from two magazines so far, but are under consideration at three more.

"When will your book be finished?" my father asked.

"Next summer," I said, without missing a beat. Indeed, then or never.

My manuscript is the maturation of my master's thesis, irrevocably altered by all that's befallen me in the past few years.

Part of the spirit of the manuscript has changed, no longer so confident and sure-footed.

Who was Cassiopeia but an arrogant queen whose pride was her destruction?

What is a constellation but in order we impose over something that has an order of its own?

How much power do women have?

That's what the "The Queen Constellation" is about.

Wherein I (what else?) Complain

2010-10-28T17:45:00.000-07:00

I examined my hair in the mirror. Soon the sheer weight of it would begin to overwhelm its dense curl and it would begin to 'fall' instead of growing outward like a little mane.

I'll never cut my hair again....

I should stayed in the hospital and let them give me fluids. I'd have recovered more quickly I think.

I got a letter from my doctor today. It was too thin to be the handicap placard forms, so I knew it could only be one other thing...

Ah, ha, yes. A letter advising me to "seek health services elsewhere." Due to a "serious deterioration in doctor/patient relationship."

'This bitch," I said under my breath.

She lied to me! What she did was unprofessional. She should apologize!

So ranted the 'it's not fair' center in my brain.

The rest of me said, "They never apologize. They never do."

I wanted to be cavalier.

I couldn't.

My nose is running. I'm irritable. I'm going into withdrawal. And now I'm down a primary care doctor. It's not bad...the withdrawal part. I was careful to taper myself down over nearly a month's time.

I finally get in contact with my neurologist's nurse practitioner about the whole ER 'altered mental status' debacle. She doesn't think it needs a follow-up appointment or any adjustment in medication. As long as I can get out of bed and to the bathroom by myself.

Okay, but might I set the well-being bar just a wee bit higher than "self-toileting?"

I wish that this weren't happening.

I used to be the kind of person who could bear up under anything without complaining. Now I complain all the time. I cry, but in frustration rather than sadness.

My ambition which drove me through undergrad with a scholarship and grad school with a fellowship now seems to be eating me alive.

I try to write some more poetry as I wait to hear from the journals I submitted to in September, preparing a second bunch (a winter bunch) of poems to submit to yet more magazines. I continue remodeling my room, scraping the baseboards free of paint, painting my dad's old desk, taking down the blinds and hanging curtains.

I scrubbed my closet doors free of my sister's graffiti, a process that took hours and left my hands, elbows and shoulders aching. But when an old knob to one of the doors left a gaping hole where I unscrewed it I started crying and pitched it across the room. My cat started from his perch on the dresser, knocking over the phone and the TV set. I screamed at the top of my lungs.

I'm kind of an emotional wreck. I was someone who really needed to feel in control of her life and now I'm just the opposite. Such is the ignorance and indifference to my condition that I consider a good appointment one where the doctor admits zie has no idea what zie's doing.

I am unaccustomed to being in a position where sheer effort did not yield some results. If I was untalented at a subject I studied harder and did better. When I set my grand goals, I went after them with everything in me.

I know it isn't, but my inability to get my doctors to take an interest in my symptoms, no matter how strange or debilitating they might be feels like a personal failure.

Surely if I presented myself better, my doctors wouldn't be so rude to me. Surely if I faxed all the right documentation ahead of time, they wouldn't be so dismissive. Like when I was in the hospital for the first time, not knowing what was wrong with me, I was prepared to jump through any hoop, no matter how difficult or degrading for that matter, if I thought it would lead to some help for me.

Because I equated help with getting better and getting better with going back to my first, best set of goals.

At one end I am blocked by my illness and at the other by doctors.

My ambition and my fury mingle, forming a single destructive will.

Surely whatever I turn that will toward will be completely obliterated.

So I have to keep it away from myself at all costs.

Altered Mental Status

2010-10-22T22:19:00.000-07:00

That was the diagnosis on my discharge sheet from the ER. They wanted to keep me for observation, but I recognize the effects of my pal dysautonomia when she comes a-callin'.

This is already going to be expensive what with the ambulance ride and the testing and the CAT scan and the catheters, but what gets me is that it didn't have to happen.

It happened because they didn't fill my Florinef on time. It was a joint effort 'they', they my neurologist's office, they my doctor and they the pharmacy. I thought I could get away with one week without it.

I thought wrong.

I was at the cancer center where I go for iron infusions for my anemia (it is also where people go for chemo, hence the name.) As the nurse rooted around for a vein, I began to get light headed. She stuck me around four times...still no luck (looking back, this should have been a sign to me that my blood wasn't flowing properly.)

I was trying to shake the light-headedness which was severe, despite my being seated. I raised my feet. I put my head down on my arm.

Then I passed out.

My mother shook my awake. I looked at her, apologized for 'falling asleep' and then passed out again. My mother called for the nurse who tried to rouse me without success. Then I strange thing happened. I woke up, or thought I did. I sat up.

I couldn't talk. I couldn't really move. I could move and focus my eyes. I sat there and stared into the mid-distance with more and more people calling my name. I was otherwise alert. I could hear, I could see, I could feel and smell.

I could smell those awful smelling salts they stuck under my nose. My eyes watered. But I didn't move or otherwise react.

One nurse goes to call an ambulance. 'Ah, shit.' I think. 'Here we go.' My feeling is of frustration and a bit of confusion. Not fear. I've had, incredibly, more frightening things than this happen to me.

Still, I wish my autonomic nervous system wouldn't do things like this.

Now the EMTs are hauling up by my armpits and knees. Now one is doing a sternal rub. Now he is doing it harder. Now he does it again.

I CAN FEEL IT AND IT REALLY HURTS.

But I can't say so or react. The link between my mind and body is very weak. I wonder if this is what locked-in syndrome is like, and that thought does frighten me, so much so I consciously turn away from it in my mind.

One thing I notice is that if the situation is calm, I can talk a little, although it's very, very difficult.

In a quiet corner in the hospital, waiting for a room I gently poke one of the EMTs in the side. He turns to me instantly, looks at me, says my name. "Wh–?" I manage.

"Where are you?" he guesses. "You're at the hospital. We brought you here after you passed out. Do you remember?"

I start to answer in the affirmative but the other EMT has gotten wind of my return to the world and grabs a nurse. The resulting commotion renders me unable to speak or move again.

It's like I only have a very, very little bit of pressure. And things like loud noises and sudden movements and flashing lights sort of use it all up.

I needed to tell that EMT to lay me flat so I could recover more quickly. I needed to tell them to give me fluids and lot of them and epi too, if necessary.

But I couldn't. And my mother, bless her heart, goes to pieces in these situations and never fails to be worse than useless. She doesn't mention any of my diagnoses to the nurses or doctors, instead talking about the virus I got two years ago and how my joints hurt when the weather gets cold. I was listening to her verbal diarrhea and getting really, really angry and frustrated.

I told her I was typing out a list of my diagnoses and what to do in case of every situation I could think of where I might not be able to speak for myself. That was she can just give it to the doctor and go sit down somewhere.

I love her though.

In any case, next there were catheters and a billion blood samples and a rectal thermometer (I couldn't open my mouth.)

I swear I haven't had my temperature taken in my butt since I could walk and I can assure you it was a very unpleasant and unwelcome experience.

At the end of it all, I calmly asked to go home. I didn't want a bigger bill. I didn't want to take the chance of getting an arrogant or worse, abusive doctor. I was tired and bruised and I wanted to go home to my cats and the new Law and Order SVU (I caught the last half.)

I wanted to tell you all about it, since it relates directly to entry below this one, but I'm still not sure how to feel about it.

When I offend EDS it punishes me with pain. When I offend dysautonomia it does things like this.

Just a short post...

2010-10-15T23:21:00.000-07:00

I'm still recovering from a huge clusterfuck (no other word for it) that involved me trying to get my Florinef refilled for an entire week. So for one whole week, no Florinef...those of you who have POTS know.

So, I spent the week tachy and exhausted, but I didn't stop my daily activities, just curtailed them. I stopped driving alone (too dangerous when your blood pressure could just abandon you at any moment.) But I've been too foggy to do much writing or talking or anything else that required my higher functions.

Today was the first day I had it back. First, there was no response from the pharmacy's attempt to get it refilled. Then I called and was told I had to have it filled by a different doctor since I'd been seen in a different area of the clinic.

OR SOME NONSENSE. My blood pressure was 85/55 and and I was really not grasping the finer points of her BS excuse.

So I called my primary care doctor and asked her to refill it. She said no, to have my neurologist refill it. I called back and said they were giving me the runaround. She said she didn't care, she wasn't filling it. Why, I don't know. You'd think I was trying to fill a Schedule II pain medicine over state lines for all the trouble she gave me.

Finally, early this week, the script went in. But I looked in the bottle and discovered pink football-shaped pills instead of round, white ones. I called Walgreens and said what happened to the Florinef manufactured by Global, because I'd tried these other ones and ended up with a nasty reaction.

Tough, they said. They weren't switching distributors on account of one patient and if I didn't like it, I could just switch pharmacies. So I did, to CVS. Two more days and finally...I got my medicine.

After this went down, I decided to call my primary up and see if my handicapped placard paperwork was ready to be picked up yet. Her secretary informed me the doctor had said, "I don't feel that patient needs a tag."

I said, "That's not what she said when I dropped the paperwork off!" At the time she'd reacted with some surprise but she still took it and said I'll have the secretary call you when it's ready. She did not say, I'll sit on this for three weeks until after you've had another doctor's appointment where you might have had this filled out, then reveal I never had any intention of filling it out.

I sat down and banged out and angry letter, then faxed it to her. It was too long to copy in its entirety, but here's an excerpt:

"...you know what? Forget it. If you've read all the reports you've gotten since you've been my doctor and you still don't understand why I might need a handicapped [placard]. I doubt I could explain it to you in a way that would change your mind."

I'm through with her. She can handle any incidences of strep throat and bronchitis I happen to come down with, since she's made it very clear she has no interest in learning even the most basic information about EDS.

And thus she is no help to me where I might need it most.

In other news around these parts. I'm looking ahead next month to finishing my remodel of my room. I've touched up the paint, hung curtains, painted my bookshelves, bought a dresser from the Salvation Army, arranged my books, cleaned out my closet of all unworn clothes and shoes (farewell, my beloved six inch platform heels) and bought new sheets for my bed.

I own the only full (double) sized bed in the house. My parents sleep in a queen and my little brother sleeps on a twin. I really want a nice big fluffy down comforter for the upcoming Midwestern winter, but they're so expensive!

Anyway, next month is an Ikea trip to get the rest of my furniture (desk chair, file cabinet and nightstand) and some incidentals (a vase, some picture frames, and probably some cheap items I don't really need but catch my eye anyway.)

There is also an EDS meeting in Pittburgh (where the nearest Ikea is) on the same day, so I figure I'll make an overnight trip of it.

And of course, on the 11th and the 12th is the Cleveland Clinic's Conference on Management of Hereditary Disorders of Connective Tissue. Information here. Registration is $50 for patients.

It's geared towards doctors, but I don't care. I was trained as a science/medical journalist in undergrad, so I understand medical jargon (and the jargon of many, many other sciences) quite well.

Of course, no one actually hires medical journalists anymore. They have a doctor as a correspondent if they can afford to (see CNN's Sanjay Gupta) or if not, ordinary journalists cover the story. This is why you see so many errors in medical articles, especially those written about rare and/or complicated conditions.

I am a woman....

2010-10-09T23:42:00.000-07:00

Toni Bernhard's How to be Sick is probably the best 'living with chronic illness' book I've ever read.

The book begins with the crux of the issue. You get sick; you don't get better. Bernhard, who suffers from CFIDS with a side of POTS and neurally mediated hypotension is perfectly correct to suggest that our Western society focuses on getting well not living well while being ill. With a Buddhist philosophy it neither concerns itself with the question of the future ('How do I get back to work?') or the past ('Why did this happen?')

It reminded me of a conversation I had with a friend with CFIDS right before I left Chicago, being unable to take care of myself any longer. She said, "Don't let it define you."

I spent a long time trying to decide how much space to afford to the thing called "Ehlers-Danlos Syndrome" in the entity called 'me.' This caused (and causes) me a lot of angst because I don't want to give EDS a large plot of myself, but it has taken one. It has left me helpless to pursue my goal of teaching. It has put me at the mercies of people who only care about whether I have a job insomuch that they can judge me for not having one. In other words, because they lack the knowledge necessary to help me, all failures whether social or physical are my fault. This is why knowledgeable doctors, those rare angels, seem like the nicest people in the world.

I know that EDS isn't going to kill me; neither is it going to get much better. Periodically it will sit on my chest and I will have no choice but to wriggle and struggle and try to breathe...but I must not let it define me.

Though it clearly will (and has) changed me.

Here Toni Bernhard has an advantage. Buddhism teaches the mutable self, Christianity the immortal soul. Her way makes it easier to be sick. Well not easier, but it frees you from the burden of integrating "sick" because there is nothing to integrate sick into.

To a Buddhist, Ehlers-Danlos Syndrome is just something that happens to be acting on the collection of sinews, fluids, fibers, thoughts and feelings collectively known as 'Yvette.'Because the Buddhist 'self' is ever in flux, there is no need to worry about EDS ever defining me. There is no 'me' to be so precisely defined.

But I'm not Buddhist. If I had been raised an atheist, I would have been the disappointing kind who finds her way back into religion. I might have chosen Buddhism because it seemed like a challenge.

Not allowing a concrete 'I' to exist when you are a Black woman in a country like the United States is dangerous, because others will constantly try to define it for you. Not necessarily in words...not necessarily even in actions. But the very atmosphere of this country is somewhat poisonous because of its history and merely living here will expose you to it.

From a young age, I carved my 'I' out of solid steel. No, I am not like that. I am not ugly. I am not stupid. I am not a slut. I am not lazy.

For example, there's a certain shopping plaza on the far west side of Cleveland where I occasionally go because they have a nice restaurant, a Mac store, an Apple Store, an Urban Outfitters and other fun stuff. It is also in a neighborhood with very few blacks. No doubt some residents wanted it that way, so whenever I shop here I get all sorts of unfriendly stares. The stares are a combination of fear and hostility and disgust.

Yes, that frank, although only for the briefest moment.

I'm accustomed to it. Under that gaze I shop, stroll the rain-slicked boulevards. Under that gaze I drink wine, eat, laugh and joke with my friends and family. The gaze does not inform me. It does not deter me. It's merely something that falls on me, like rain. And because I have been in the gaze for so long, because I am so wet, I cannot get any wetter.

When my Ehlers-Danlos Syndrome made itself known to me, there were times I had to walk with a cane. And the presence of the cane brought a new gaze. A woman stared at me almost as if I were a child, a sickening mixture of pity and condescension and something else I couldn't quite place.

I didn't like it. I didn't like its infantilizing nature. The stare represented what I was going to have to integrate into the 'new' me. Though I don't want to and will sometimes not use my cane and just walk very, very slowly.

But sooner or later....

I admit that one way I deal with very bad pain is to divide my thoughts from my body, thinking, 'My body is in pain' instead of 'I am in pain.' Try it. Occasionally I will divide thoughts from my feelings to find errors in my thinking.

I tried Toni's experiment to live in the present, to stop regretting the past and dreading the future. I was almost in tears about whether or not to spring for the part time teaching job, when I looked up and took in the landscape.

What was true right now, Toni asked?

I thought, 'I am a woman standing on a deck, gazing over the fall foliage.' For a moment, the present was an untapped mine of beauty. The fall trees were beautiful, variegated yellows and oranges. The remaining green was just a blush.

It was warm but the breeze had just a hint of chill in it, like water with a single ice cube. The tall grass shivered in the wind. My neighbor's pentatonic wind chimes rang. The sky was open, endless blue.

I do it again now. I am a woman, typing at a desk that belonged to her father when he was sixteen. It has recently gotten two coats of bright white paint. Cotton curtains with lace embroidery hang over the windows. It is quiet except for the sound of my typing. No one is bothering me; I am not in pain. I am not hungry or thirsty. I am warm.

For the moment, nothing else is true.

But I can't give up 'me.' I can't keep dividing until I get down to nothing.

Nevertheless, you really should read Toni's book. She understands the middle ideas, neither catastrophizing or glossing over the reality of being ill.

"Are You Generally Happy?"

2010-10-07T07:19:00.000-07:00

Three days ago my friend J. returned to Chicago. This is the same J. who comforted me after the first hospitalization I had related to EDS. I've always been closer to her than I realized.

We roamed the city and the surrounding 'burbs together, going from museum, to dinner, to a surprisingly chilled-out jazz club with awesome cocktails and all the esoteric little shops that line Coventry Street. It brought back fond memories of being a little girl and going all those places with my father. Being the first born I was the experiment and my father was going to give me 'culture' and an appreciation for things outside of my realm of experience.

It worked.

I was very happy to see J. and promised to come back to Chicago in January, when the weather was miserable and the flights were cheap.

Earlier this week I finally got around to getting a iron transfusion. I've been anemic for quite some time and no one knows why. I failed at raising my iron through diet and can't take iron pills so putting iron into my veins was the next course of action.

At the appointment I was given a thorough questionnaire to answer. one of the questions was 'are you generally happy?' I paused over it for a long time.

Then I circled 'no.'

I am not generally happy, though I am at times, happy. I am not generally sad either though.

I guess I'm resigned. I'm pessimistic. I'm weary. I don't have any expectation of a happy life anymore. Well, what I defined as a happy life. There won't be any globe-trotting, teaching English as a second language in the Far East. I can't imagine life a tenured professor, happily married, a child, two dogs and a house somewhere in the northeastern part of the country, nestled in a grove of tall pines.

Which isn't to say that I think I'll die alone in a run-down neighborhood and my cats will eat my body either.

Somewhere in the middle. Which to me, is just as repellent as the idea of having cats eat my dead body.

Because then, what was all my hard work for?

Just before I graduated, and right before I spent a couple of months housebound, one of my professors sent me an e-mail to let me know how disappointed she was in my performance.

I was rightly furious, but I can't say I don't feel that way towards myself sometimes.

My anger circles from the doctors who didn't believe as a dislocation-prone child to the doctors who told me I was making it up for attention, but it never fails to end up directed right back at me.

Why didn't I insist? Why didn't I ask to see an ombudsman? Why didn't I transfer hospitals or invoke my Medicare right to be treated adequately? Why are my genes all fucked up? Why did I have to spend all this time thinking I was intrinsically lazy or flaky when I was really sick?

In light of that last statement I've had a lifetime of experience at blaming myself for things that aren't my fault.

I want to put all this out of my mind. I want this guy to call me so we can go to lunch. Or I want to go to lunch with my other guy friend who I still do have a crush on.

I'm tired of feeling angry and ashamed and sick. When I am happy, the happiness has to elbow its way around these omnipresent negative emotions and is often much diminished by the time I feel it.

The local community college has a part-time teaching position open which I am psyching myself out repeatedly about. Could I? Could I possibly? Or is this going to be retread of the time when I set up an interview and then went shopping for a decent pair of pants (I'd dropped two sizes) and ended up in the hospital for five days, from the exertion of shopping for two hours.

If I get hired, am I going to have to excuse myself from class to run to bathroom and dry heave or vomit like I did in my aforementioned professor's class?

Hanging out with J. taught me a lesson about my energy. I get about three days of 'push.' The fourth day is 'crash.'

After days of obsessing I can only conclude my ability to do this job is contingent on two things: the nature of my schedule and how much they are willing to accommodate me.

So many people treat work as the goal, including me. I'm falling all over myself.
I'll do anything, anything to feel better, even if it's by just a little. Now I'm saving up for waist high compression stockings and an abdominal binder. The compression is the strongest available. That should help, right? Also, medicine to prevent migraines. Doing pilates four times a week instead of two. Getting a membership to the city's indoor pool and doing water aerobics for two more days a week. And I really hope to get ring splints so my hands won't ache so badly, at least five of them, for the worst behaving joints. Forearm crutches to get some of the weight of my infernal hips.

I talked to my mother late last night. I was scrubbing the scratches in my wood floor with walnuts (this works very well.) I was also sanding paint off the baseboards and cleaning spilled paint off the floor with nail polish remover. Earlier I had finished putting a second coat of paint on my desk and and painting over the freshly spackled and sanded holes that were left behind when I took down my ancient blinds. I was trying to set my mind at ease, but I was really only succeeding in upsetting my shoulders.

My mother said I was afraid and that my fear was making me unhappy and making me feel as if I had no future. She's right I think, but I don't know how not to be afraid. Especially since my doctors are spectacularly unconcerned with setting my mind at ease. They just keep trying to tell me that this shouldn't affect me so much, I'll grow out of it (really?), I'll be fine, it can't be that bad.

When I'm the one who knows the most about my illness, how can I be reassured?

In the world of poetry, I spent September sending out a four poem bundle to about five different magazines. Choosing which to submit to is easy; I submit to magazines I really like. Especially if they pay.

Black Warrior Review rejected all four of the poems I submitted with the following note "...we were interested in it." That's...good, right? Typical rejection statement is 'This did not meet our needs at this time."

Happy Birthday to Me

2010-09-24T15:49:00.000-07:00

I had a wonderful doctors' appointment yesterday. Wonderful enough that I must name names. Today I have to hand it to Dr. and Dr. Chelimsky, a husband and wife team who specialize in autonomic neurology and pediatric autonomic gastroenterology, respectively.

They listen. They are always respectful, never blaming patients for their own conditions. And they are bursting with good ideas: medications to try, treatment modalities, referrals to other helpful doctors.

The neurologist felt that the symptoms that scared me so this summer might be related to migraines, and I'm preparing to try the medication he recommended. I wasn't so thrilled about the idea of trying to raise my heart rate on purpose through vigorous exercise, but I'm willing to give it a try in a pool (as opposed to on dry land) where I feel pretty good, thanks to the weight of the water giving me and my ill-functioning veins and good all over squeeze.

I left the appointment filled with optimism. As opposed to other appointments, that I've left feeling defeated, or at worst, in tears.

Today I am 30, and I'm over being upset about it. Whatever else, it's simply going to be a different sort of life.

Me, Dreading a Birthday?!

2010-09-21T12:42:00.000-07:00

I am pushing the idea of being thirty around in my head like a kid pushes food around her plate. Do I want this right now? No, but I haven't got a choice. Here comes the 3-0, whether I like it or not.

While my friends have "Flirty 30" or "Dirty 30" parties, I'm still caught on the 'Wait, not yet' train. I am not done with my 20s; not until I get this whole mess sorted out.

I haven't yet figured out how to live with a condition that seems to get worse every time I turn my back. For a condition alleged not to be progressive...well, that seems suspiciously like horse shit.

I can feel myself getting worse by the month, meaning every month brings more dysfunction and more pain with it. Now I cannot sit on the floor except to sit flat...any other way and both hips will immediately sublux. I wonder if this isn't directly responsible for the bursitis in my hips.

It's like an infection traveling (very quickly now) from joint to joint to complex of joints. At first my hands did not bother me at all. Then it bothered me only to write longhand. Now it bothers me to type and much else besides. The pain in the affected joints increase, their laxity increases, then other joints also begin to hurt.

It doesn't help that my father (the nurse) is in a constant state of denial and my mother (who has very mild EDS) is beginning to develop POTS and has decide to spend the fall and winter in the same state.

I still need to find a doctor. I'm about two steps from putting an ad in the newspaper and issuing a challenge for any doctor within a 50 mile radius (preferably an osteopath or physiatrist, but orthopeds and rheumys are also acceptable) who wants to treat a moderately affected woman with mild classical EDS and either closely coordinate or themselves administer a pain management regiment.

Or I can do it manually, which consists of this:

Me: Hi, do you have a doctor there who's willing to treat Ehlers-Danlos Syndrome?
Secretary: What?
Me: Ehlers-Danlos Syndrome.
Secretary: Spell it, please.
Me: E-H-L-E-R-S hyphen D-A-N-L-O-S Syndrome.
Secretary: Well let me ask and then give you a call back.

A week goes by.

Me: Hi, I called about a week ago asking if there was a doctor there who's treated or is willing to treat Ehlers-Danlos Syndrome?
Secretary: What?
Me: Ehlers-Danlos Syndrome.
Secretary: Can you spell that please?

*~*~*OR*~*~**~*

Me: Hi, I called about a week ago asking if there was a doctor there's who's treated or is willing to treat Ehlers-Danlos Syndrome?
Secretary: What?
Me: Ehlers-Danlos Syndrome.
Secretary: Ohhhhh! Well, I talked to him and he's never heard of it.

Invariably. That shit has become so old and so predictable to me that if I pick up the phone and call another doctor's office and hear the same thing, I'm likely to blow it up.

Then I called and made and appointment with the geneticist who first misdiagnosed me (desperation, I've arrived!) to see who she referred to. Only yesterday her office called and informed me that due to a family emergency my appointment would be re-scheduled for a month later.

I'm like, no, wait, shit! I don't want to be 30 until I have a doctor!

My other options are the last two rheumatologists I saw. One of whom acknowledged that I had EDS but said I was "letting the pain get to me."

Or behind door two, the rheumatologist who said I didn't have EDS I just had fibromyalgia and I needed cognitive-behavioral therapy.

But I really can't go there yet; maybe after I go a little more pain-crazy and am willing to flush some more of my dignity down the toilet.

Although, if I'm nutty enough to go back to either of them, the whole affair might just as easily end with my arrest.

Wishlists (My Birthday is 9/24!!)

2010-09-18T08:57:00.000-07:00

Amazon

Urban Outfitters

The Amazon wishlist has a lot of medical stuff on it.

Invisible Illness Week (Sept. 13-18)

2010-09-17T13:33:00.000-07:00

It's Invisible Illness Week. As in all things, I'm fashionably late. For those who are just tuning in, the invisible illnesses I live with are: Classical-type Ehlers-Danlos Syndrome and autonomic neuropathy primarily in the form of POTS (postural orthostatic tachycardia syndrome) and gastroparesis. None of this is visible from the outside, unless I happen to be using a mobility aid or wearing a brace or two (wrist or knee as of late.)

As I am reminded quite often, my illness is to some doctors just as "invisible." Meaning the damage done to my body does not reveal itself in basic blood tests and imaging which means that the ignorant comments I get from my peers, I am almost just as likely to get from my physicians. But because physicians hold a measure of power in the life of any chronically ill person, their attitudes and beliefs are far more dangerous.

Earlier this week, I filled out a form for a handicapped placard. My joints are continuing their degeneration, meaning they are laxer and thus more painful, and more likely to sublux (partially dislocate.) My hips are probably my worst joints, as I have bursitis in all four bursae.

So, after one very crowded trip to the mall to get some much needed fall clothing I'd decided I'd had enough. With my combination of degenerative joint disease and chronic low blood pressure on standing I needed to be closer to my destination. Hell, I'd love if I could just skip driving and materialize at my destination.

But since Star Trek is just a show, I decided to swallow my pride and fill out an application for a handicapped tag. To be allowed to park closer at businesses. That's all.

My doctor, who has been with me for the past six hospitalizations said, "You think you need this?"

"Yes." I said, tucking away my surprise and dismay for later.

"Does she not get it?" I later asked my mother.

It was reminiscent of my final weeks of grad school. I hadn't been able to attend class consistently in weeks and my grade was based in large part on attendance. Then I had a professor who refused to give incompletes. I was in the hospital for nine days at the end of which they basically discharged me because they couldn't stand not being able to figure out what I had.

Without an explanation from my doctors, I had none to give to my professors. One wrote me an e-mail saying how disappointed she was in me, that I would not try harder.

One lone professor took me at my word, that I was ill and not lazy or doing this all for kicks. And because of him, I have my MFA today. If he had not done the right thing, all the student loans and two and half years of grad school would have been for naught.

Having an invisible illness means always being in a situation that is ripe for misunderstanding. Not just ripe, perhaps, but bound...destined for misunderstanding.

"Well, you look great!" said the director of my program as I sat in his office after my nine days in the hospital.

"You look good!" said the gastroenterologist I saw in the hospital when I vomited continuously, every few minutes, for a full day, until only blood and bile came up.

And just before questioning my need to park in the handicapped spots, my doctor said how good I looked and how much she liked my new short hair.

The hair I had hacked off with craft scissors in my sister's bathroom. While crying and muttering to myself about how much I hated "this place."* Because my shoulders hurt so much when I tried to comb it.

I am questioned so much, particularly by my physicians that I begin to question myself. Could I simply push my way through the pain? Was I just afraid of entering the workforce during a time of economic depression? Did I somehow have an eating disorder I wasn't aware of?

And then I am thankful that I was born black and thus can clearly recognize, if not reject things others say about me that simply are not true.

I am no more imagining my pain than I imagined the man who called me the n word in undergrad. Authority and intelligence gives them no privy to what only I can know.

I...I...I...I.

*'This place' being the world.

Back to Reality

2010-09-10T19:22:00.000-07:00

I dreamed I'd died as a little girl and nothing was right without me. My parents divorced, my sister remained as irascible as ever but lost her compassionate heart, my mother was nowhere to be seen. It took me a while to figure out that this was what had happened, because I was of course, dead. After I figured it out, I begged anyone to let me go back and be alive and set the world right again.

I suppose I dreamed this because in a moment of comingled pique and weakness I wanted to have not been born, not to have had to suffer and been disrespected and emotionally and physically abused by doctors and given no recourse. But when the patient's blood work and imaging says she is well, she must be well. And a well person does not lie in bed all day, so here come the doctors to make reality align with the scientific method (which cannot ever be wrong.)

They haul me up by my shoulders, which immediately sublux. "My arms," I moan. "It's okay," they say, "It's not good for you to be in bed all day, we're just taking a walk." They force me onto my feet and frog-march me down the halls. I do my best to keep up the pace. Nurses give me pityingly insulting looks. I'm the crazy girl. A seizure hits without warning, nearly pitching me backwards. One nurse's face registers alarm, then he is conflicted, not knowing what to make of me and my behavior.

Yes, that really happened. That was the hospitalization I was finally diagnosed with POTS, after seven days of hell. I had nightly nightmares for months. Should the price of truth be so high? No one ever offered so much as an "I'm sorry."

Tomorrow I am re-introducing myself to world, so to speak, in my full physical form. The first step was leaving the house again, then starting this blog, and now I am meeting with a group of people I don't know, but share a common interest with: Japanese language.

I had four years of Japanese instruction and I still do remember quite a bit.

始めまして。私の名前はイベットです。

My name is Yvette, nice to meet you.

卒後した後で日本語を忘れてしまいした。ごめん！

After I graduated, I totally forgot my Japanese, so forgive me!

The idea of Japanese as my second language acts as a shield, a purposeful barrier to prevent me from disclosing too much of my past or expressing the full range of my emotions. Japanese itself prevents me from being effusive. As a language it tends to shy away from emotional over-involvement, although I'm sure some would disagree.

In other words, most of the things that I would say and embarrass myself in front of people I barely knew, I simply don't have enough Japanese for. I hope I can make new friends and not scare them away when I explain that I am a 詩人 (poet) and yes that is what I do for real. Which means I'd better bring a copy of Starting Today...

But I also do want to mention something about being sick.

大学院の卒後した後で、とても病気になりました。本とに怖いかった。

After I graduated from grad school, I got really sick. It was terrifying.

Weirdly, I feel nervousness verging on outright fear. Like anyone with my combination of ailments, I look normal. I spend most of my public hours in able-bodied drag, showing as little sign of pain or struggle as possible. Long stretches of sitting require me to drink something I invented recently called my 'high-octane' Gatorade, an obnoxious solution of water, lime juice, baking soda, salt substitute (potassium), epsom salts (magnesium) and a full tablespoon of salt. All this made mildly more stomach-able by the addition of two tablespoons of honey. Each 1.5 L bottle contains over 8000mg of sodium.

It's the only way I can stay upright for longer than an hour at a time. I don't look sick, so I can't look sick, not even for a second.

And if need be, I'll remember a sudden appointment and bail before the going gets tough.

Pigeons & Doves

2010-09-07T21:56:00.000-07:00

I've written out this whole plan of how I'm going to re-do my room and make it fabulous.

And let's not even go there with my love for pricey mid-century modern furniture.

Ever since I was little, my grandmother told me I'd better get a good job because I had "champagne tastes and a penny pocketbook."

Yet another piece of advice unheeded, though not intentionally.

Ever since I've been home I've been driving myself nuts doing housework, writing poems, editing poems and submitting poems. Anything to feel useful. Okay, so I can't do regular work, but I can still write and do housework.

Tomorrow I have to head down to the local public aid office while praying continuously to Jesus not to see anyone I know. The last time I went I did and we ended up talking and she was telling me about her kids and then she asked me about my non-existent kids and I half-mumbled, "I'm disabled."

"Oh." she said. End of discussion.

I'm reminded nearly daily how people feel about people like me, siphoning off the hard-earned tax dollars of others while relaxing and watching cable. One guy wrote a long, impassioned editorial to the local paper calling us "pigeons" as in people who relied on the handouts of others for their well-being. I actually cried about it.

I think it was because it was not long after one of my doom-atologists(thanks Ioma) kept telling me to get a job. And I kept trying to tell her I wanted to!

And my other doctor who accused me of letting the pain control me, as if this whole mess were some sort of character failing instead of a GENETIC MUTATION.

My grandmother also used to say that doves and pigeons were practically the same bird and it was silly for them to be praised in one context and hated in the other.

Also, I don't know how much readership I have, but I wanted to mention that the world-renowned Cleveland Clinic is having a conference on the management of heritable connective tissue disorders. They will be discussing not just EDS, but Loeys-Dietz Syndrome and Marfan Syndrome. Some of the EDS heavy-hitters who will be in attendance are the eponymous Dr. Hal Dietz himself, as well as Dr. Peter Byers.

The cost for patients is just FIFTY dollars, far less than what the EDNF charged for their conference. The conference is November 11-12 and will take place at the hotel adjacent to the Cleveland Clinic's campus. More information can be found here.

If anyone wants to come up and attend I have a spare bed. I read through the presentation titles, and although it's more geared at treatment than information, I pronounce a worthwhile investment, particularly at the price which is the same whether you register online in advance or at the door the day of.

Cleveland

2010-09-02T22:21:00.000-07:00

Cleveland means I screwed up, but it also means I know when I'm licked.

The plan was to get a job, but instead I experienced even more decline in my condition. By the time I left Philly I could walk fewer blocks, tolerate less heat and had more frequent subluxations and a subsequent greater reliance on my pain medicine.

This in a matter of months.

My sister said she couldn't live with me any more. I think truthfully she didn't want to watch the physical decline of her older sister, her playmate, her confidante and one whom was once warmly aspired to.

Her sister didn't want to watch it either.

I wanted to be far, far away from people. Even my friends. I wanted to not exist, which is not the same as wanting to be dead.

Sometimes I feel like the only person diagnosed with EDS who hasn't got her shit together.

I fail at having a positive attitude. I cry when doctors are rude to me. I cry when creditors call. I cry sometimes for no reason at all, and then wonder if I'm getting depressed.

Even though it's not my fault. I run through my PT exercises twice a day. I fill a liter bottle full of homemade electrolyte solution three times a day and drink it. I smother my food with salt. I take my medications diligently.

Yesterday, I fainted, mostly out of my own stubbornness. I felt the swimmy light-headed feeling come on but I thought maybe I could push through it. Maybe it would just go away. After all, in teaching I couldn't afford to go around fainting whenever I (my body) felt like it.

After a battle of wills (myself and myself-other-than-my-body), I awoke on my hardwood floor with sharp flashes of pain in my hip and shoulder where I'd hit. My mother rushed in with 20 questions. When I answered none of them, she said, "Do you just want to lie there for awhile?"

I nodded.

Who are these people who smile and bear it, even though they're in pain? Who are these people who bear no ill will to the doctors who belittled and mistreated them? Who are these people who when the EDS charity lost hundreds of thousands of dollars worth of research dollars to the North American Bear Society had the graciousness to tell them congratulations.

God and Jesus and Mary and Joseph and all the disciples.

FUCK. BEARS.

I very nearly wrote that gem on their Facebook page.

As I walked along the lake today I periodically dropped into a squat, obliging my body so I would not faint and fall into the water. My father said nothing. I said nothing. I just knelt, forcing the blood back into my brain, and continued walking. I was swigging water all the way.

Tonight, I am listening to the wonderful din of the crickets with my windows flung wide open. They aren't singing to me, but in spite of me.

I was raised in this house. When we first moved here, I was three years old. My grandmother planted two yew saplings in our backyard for the meaning of my given name, Yvette (little yew.) They are not so little anymore. Almost taller than the house and full of small birds and squirrels.

Yew trees are known for being strong, flexible, long-lived....

There is a massive gulf between being well enough to care for yourself and being well enough to work, even part-time. Especially when the root of your problem is the inability to assume the upright position.

My mother and I always make jokes about jobs women can do while lying down.

The closest I came to writing a poem about being sick that was not heavily metaphorical was "The Poor Thing."

...
The first pitying look I ever received, walking with my
cane and my mother on the first day of autumn.

Her face just said, Oh, you poor thing.

The poor thing slammed her purchases into the back seat
and then clambered into the car.

The poor thing speeds on the highway every chance she gets,
tells her passengers to watch for the cops.

The poor thing only listens to NPR
when she's feeling good and melancholy.

The poor thing told off her last doctor
and left the office in angry tears.

The poor thing wishes she were dead.
The poor thing wishes you were dead.

Some weekends, after a long day,
on the bathroom floor of a stranger's house.

In the wide open country on a freezing night.
The poor thing asserts herself to God.
she appeals to the teeming sky.

One star must answer
or they all will.
Won't they rain a rain
that reaches across, across
that forms the substance of her body,
so close to correct.

I don't intend to ever try to publish it (it's kind of a mess), so it's fine for me to post it here.

In the land of more legitimate works, tomorrow I intend to (finally) send a year's worth of my best work to several magazines I enjoy and admire. If I'm successful, I'll be sure to let you know.

I wish I had a more crafty skill like knitting or crocheting or drawing. I could make money that way for sure. People don't buy poems. Nevertheless, I had an idea for a Poetry Drive, where I would write poems for $5 a piece ($10 for form poems) based on a single word supplied by a customer.

My ferritin has been hovering around 13 (should be 25) for...a little over a year now. I need an iron infusion (I can't take iron pills due to chronic constipation) and I can't afford it, even with insurance. I really think I might feel better if I got this infusion so that Poetry Drive idea just might happen.

I need money. I need to write. People need to appreciate my legitimate skill. For that matter, people need to appreciate the legitimate skill of many poets who labor in the peripheral, overshadowed by fiction writers.

Clothes Mouse (Petite is not a Size!)

2010-08-26T22:46:00.000-07:00

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.

Why I'm NOT writing a medical memoir

2010-08-24T22:58:00.000-07:00

My father has suggested to me no fewer than twelve times that I write a memoir of my experiences. Memoirs, when published, tend to yield much better dividends than the poetry I usually write.

The thing is, my experiences were so horrible that I don't enjoy remembering them long enough to write about them. To this day I have nightmares about doctors, am irrationally afraid of people with Indian accents and am all-in-all, a bit PTSD-y.

I don't want to talk about it, I don't want to remember it and I certainly don't want to write about it.

End of Story.

That being said, as I look over my most recent bunch of poetry, all of it is about my experiences being diagnosed with EDS, that roughly 1 1/2 year period in my life that coincided with my final year of school.

Because poetry lets me use metaphor. And really, for such a volatile experience, only metaphor will do.

I was scared out of my mind. Scared and also confused. Not too long after I was discharged (to walk the mile home sans cab voucher, since malingerers don't get vouchers) I climbed to the roof deck of my building with my friend. And cried. And cried. And cried.

As I talked to her I could never quite say what happened except through allusion, through metaphor and simile and suggestion.

Eventually, I might write a kind of memoir, but it won't be the kind you see on the New York Times bestseller lists.

The Philadelphia Experiment II

2010-07-28T17:35:00.000-07:00

Over it.

Well, not entirely.

Yesterday I cut off most of my hair. I just washed it, got in the mirror and started cutting. Then I grabbed up the softball sized clump of hair and dumped it in the trash. My hair is very thick and difficult to get a comb through. My shoulders have had enough. So...I just cut most of it off.

Like a lot of black women, I relax (chemically straighten) my hair, so at the roots is perhaps a half inch of my natural hair, darker and very curly. Also, a lot easier to take care of and perhaps most importantly, cheaper to maintain. Hair never has meant much to me. (Obviously, my sister would say.)

Emotionally I tend to find myself vacillating between anger at former doctors and despair, a feeling of staring down the muzzle of the rest of my life.

I got ill at a sensitive time: my final year of grad school. Originally a group of my friends had decided to apply for teaching positions at a college that was opening. Obviously that never happened. In fact, EDS pretty much demolished my five year plan. I might tentatively want to make a one year plan, but even that might not work out.

And...I can't exactly decide what to plan out. I'd be thrilled if I were able to teach even one class, have comprehensive health insurance and live independently. Absolutely thrilled.

But I have no idea what's going to happen, good or bad. The illusion of control I had has been completely obliterated. I'm even afraid to meet new people. With the friends of my former life all I have to talk about is health. There's been no new job, no boyfriend, no vacations, no exciting developments.

And our society has done a good job of making sure that people are made uncomfortable by the notion of others' suffering and misfortune.

"Well, what are you doing about it? I mean, can't the doctor do anything?"
"Can't you go into remission or something?"
"Why don't you just take some Zoloft or whatever?"

There are friends eagerly waiting for me to start writing and publishing poetry again. You can read some of my work here and here.

But I haven't actually felt like writing for some time now. I got a notebook and forced myself to write for a least half an hour a day, just whatever came to my mind. Most of it was doctor's phone numbers, ideas at getting better medical care, reminders to request medical records. What wasn't medical in nature was expressing my fears about my future and unhappiness at my present.

And one whole page inexplicably dedicated to clothes I would buy if I weren't broke.

In a couple weeks I'll move out of my sister's apartment and into the home of a friend who has very generously offered me a spare bedroom. It was originally my plan to go home to Cleveland, but due to our lovely economy and a stroke of bad luck, both my parents are unemployed, so I have to choice but to remain here until I can save enough money to get me and my things home.

I'd like to try and accomplish this before September 24, my 30th birthday!

"Hope makes torture possible."

2010-07-16T15:14:00.000-07:00

"You rely too much on yourself," my father said, in rare moment of emotional frankness. I admit to being very disappointed at the showing 'myself' has made these past six months.

Despite pushing for a diagnosis and throwing myself headlong into the recommended treatment I've just been going downhill. More pain, more subluxations, more fatigue and most recently, the return of my seizures.

'Myself' gets an F for failing to secure a job in a timely fashion. I called my mother crying, saying I felt like a failure, I hated this, bloo-blah, bloo-blah, as my younger sister would say.

I got really sick during the heat wave. I started getting nauseated after every meal. Then I was nauseated constantly...I couldn't eat anything. I was so exhausted I had to force myself to do everything, and the exhaustion was compounded by the fact that I wasn't eating anything!

Along with not eating enough came dehydration and finally the return of my least favorite symptom: the seizures. No one knows why I get them, although every doctor has a pet theory. Thankfully, most of my doctors agree they aren't psychosomatic. But we know they aren't epileptic. Unfortunately, they are indistiguishable from a grand mal seizure.

The night I asked my sister to take me to ER I sat slumped in the waiting seizing and passing out, over and over and over again. My sister was in tears. Even other people in the waiting room went up to the desk and said, "Um...that girl just had another seizure."

Because typically, people attend to people having seizures. At first two nurses came running out. My sister told them the only thing she knew; they weren't epileptic. "If they aren't epileptic, what are they?" one nurse asked. "I don't know," my sister said helplessly.

That was the end of their interest. A half-hour later I got a room. Both my shoulders were subluxed, but I was in no shape to fix them. I was completely out of it.

All I know is the next morning, a doctor informed me that since I wasn't dehydrated, I didn't need to be in the hospital. And since I didn't need to be in the hospital, I had no choice but to walk home in my pajamas. I was sweaty, I was stinky, my hair was mussed and it was hot. My sister had left for Virginia that morning.

I walked straight home and spent the next two days dealing with my nausea and seizures the best way I knew how.

By pulling my trash can close to the side of my bed and crying hysterically.

Things are going to be different now. Really. No amount of wishing is going to change anything. It's not something I can avert just by trying harder.

It's not like piano practice or studying Japanese or squeaking through in trigonometry in high school and macroeconomics in undergrad.

"Shit happens," is what my father usually says. "Shit is what happens to other people," I usually say back.

When the anti-nausea medicine wasn't covered by my insurance, I bought a two liter bottle of ginger ale, just like my mother would get for me when I picked up some bug in elementary school.

I need to make a decision about staying in Philadelphia or not staying.
I need to make it quickly. Quickly, quickly. I really can't think of a job I can do right now.

(Who's running this show?)

At my last appointment, my physiatrist explained that the muscles in my hand are weak because the wrists aren't stable. "Good," I said. 'Good,' as in, 'it's not a nerve damage issue.'

I drop a bottle of soy sauce. Glass goes everywhere. I drop a bottle of vinegar. Glass goes everywhere.

(How do I stop this terrifying slide?)

I take half of a pill and curl up with my heating pad in front of the TV.

Hating 'myself.'

One Small Update

2010-07-09T16:54:00.000-07:00

The recent heat wave that rolled over the East Coast was not kind to me. I thought I had gotten away with going out on one of the 100 degree+ days, but the next night I was in ER getting fluids. Suffice it to say it was one of the more unpleasant trips I've had and it culminated with me having to walk home in my pajamas in the same heat that had sickened me in the first place. Boo. I was instructed to follow-up with neurology as a result, but I really don't think anything will come of it.

Towards the Solstice

2010-06-17T20:12:00.000-07:00

In the dream I was in a wheelchair. I was wheeling myself up an incline, which was a little strenuous. It was a long, empty hallway. At the end of it was my elementary school gymnasium. I talked to all my old teachers, some of whom were quite elderly by now. There was another man in a wheelchair. I bumped into him by accident and my purse managed to get tangled around one of the arms.
"Sorry," I said. "I'm new at this."

Then I was in a hospital parking lot. It was familiar to me. The hospital where my grandmother died, and where a few years later I would be hospitalized four times in one summer for complications of dysautonomia.

It was chilly and raining, so autumn maybe. I was going to my car, but it was raining so hard I was having trouble seeing. I didn't have an umbrella or anything else to keep the rain off. I half fell into a chuckhole in the asphalt and almost got stuck. Muddy water soaked my socks and shoes.

It started to rain even harder, to the point I felt like I was choking on it. I went over to a little awning near the parking garage to see if I could wait out the worst of it.

There was a nurse standing outside. "Not much fun is it?" she asked. "No kidding," I said.

My dreams tend to be more figurative, so this very literal dream stayed with me. I'd been tiptoeing around the idea of a wheelchair in my mind, wondering what it would be like. My mind decided to try it out in the only reasonable venue. My subconscious.

In the actual world, the cortisone shots I got in my hips are wearing off and the bursitis is back in force. There's not a day that doesn't find me on the couch with my heating pad, in spite of the heat.

There's a lot of uncertainty at this point in my life which makes me feel restless and sad.

In other less crestfallen news, the issue of Pain Pathways I was interviewed in is now on the newsstand (at Barnes and Noble at least). I sent a copy to my parents.

Also, I've found a doctor whom I don't hate. He's actually attentive and willing to work with me on the pain issue. I was so shocked, I actually didn't think he was going to write the prescription. I kept expecting him to renege at the last moment. But he went ahead and wrote it and just like that....

I don't know why my old doctor refused to budge on the issue.

Life & The Pursuit of Happiness

2010-06-01T11:25:00.000-07:00

Despite some initial hiccups, I find I'm settling nicely into life in Philadelphia. The weather is nice enough, warmer than what I'm used to, but my allergies haven't been a problem at all like I was expecting.

Since Chicago I have a lingering fondness for living in city: the throngs of people, the sounds, the sheer closeness and convenience of everything. Best of all, people are openly friendly, which I didn't expect from an east-coast city. It's not unusual for someone to strike up a conversation with me anywhere: at the pharmacy, at the market or even standing on the street.

Yesterday, my sister, her roommate and I sunned ourselves on the beaches of the Jersey Shore. (Not spotted: J-Woww, Snookie, etc.) I wore my new bikini for the first time ever and enjoyed running through the icy waves along with kids on boogie boards and cliques of teenagers.

Soon I'll begin buying some furniture to furnish my room. (Hello, Ikea!) I kind of love interior design. And I still need to hike up to the social security office and apply for a new card, something I'm not particularly excited about (ask anybody with POTS how they feel about standing in line.) Unfortunately, it's necessary for my application for medical assistance.

On the ever looming job front, I looked at job tutoring SAT prep to college hopefuls. I've always been an excellent test taker, able to outperform my peers on tests even in subjects I had no real aptitude for like Chemistry. I'm positive that I could pass the screening test necessary to teach prep for tests like the SAT and ACT.

Over on No Tell Motel, a online literary magazine, I read some poems by my thesis adviser. They reminded me that I can meet poetry where I am right now, without waiting until I get my mental footing. This confusion can be codified in words.

I've had a lot of pain this past week. It continues to boggle my mind how long it has taken to get pain medicine that works. January was when I was first aware of the pain exceeding the reach of my daily medication, tramadol, and made my request to my rheumatologist for a different medication. Despite acknowledging that the standard treatment would be a controlled release opioid she proceeded to give me the runaround until I finally dumped her in disgust. Now it's June. With doctors I find I spend so much time defending my diagnosis that I can barely get around to actually mentioning the problems I'm having. When I finally do, it's usually, "Oh, you need to see a (different type of doctor.)" It's beyond frustrating. It's a similar problem I had when I got diagnosed with POTS. No doctor wanted to take responsibility for my care due to their lack of experience with my diagnosis.

There are many things I'm willing to endure without medical intervention, but the loss of my mobility is not one of them.

The State of the Union

2010-05-28T10:48:00.000-07:00

I wanted to use this entry to mention some of the things that have been going on with my body. I noticed while reading past entries that I tend to allude to a lot of issues without really fleshing them out.

For instance, this hip problem that was causing me so much pain and leading to entire days spent in bed turned out to be bilateral trochanteric bursitis. Or, inflammation of the outer bursa in both my hips.

The last rheumatologist I saw in Cleveland might have been insulting, but she did actually examine me and discover the bursitis. I got a steroid shot in each hip that visit and as a result haven't had to rely on my cane for a single day since.

This makes me even more infuriated at the first rheumatologist I saw who was so focused on NOT treating my pain that she missed a really obvious diagnosis. People with EDS are prone to developing soft tissue arthritides.

Before I left Cleveland for Philadelphia a sympathetic pain management doctor prescribed a month's worth of Vicodin. My pain level went down and my activity level went way up. And then I ran out, replacing them with Darvocet, an apparently inferior newcomer.

The Darvocet came from the latest rheumatologist I saw, selected from the Ehlers-Danlos National Foundation list of physicians. I'm not sure how she wound up there, because the appointment concluded with there wasn't really much to do about EDS and maybe I should see an orthopedist. She didn't, much to my surprise and relief, downplay my pain.

I'm not sure, it was a strange appointment. I think she just didn't quite have a handle on what EDS did or how it was diagnosed. She kept asking if my geneticist was sure I had it. I kept saying yes. She also made me disclose my entire psychiatric history, an experience I found so uncomfortable I finally said that it was ten years ago and I didn't want to talk about it because I didn't see how it pertained to my treatment now. Then she said I might overdose on my pain medicine.

I said if I wanted to overdose, I'd overdose on something sure to do the job like Tylenol which is readily available. By this point I was getting curt. What is it about these appointments that try to make me feel like a big baby who can't take care of herself?

All in all, I'm not sure it's worth the almost $50 it takes to rent a Zipcar and get there.

I have two more appointments upcoming...one with a physiatrist and one with a different rheumatologist. I hope one turns out to be a good fit. 'Auditioning' doctors is expensive and I'm not sure that I'll be approved for medical assistance.

On the positive side, I think my autonomic nervous system might be trying to heal itself. My GI side effects have gone way, way down. The loss of appetite is still fairly constant, but the nausea and vomiting have almost gone. I still get constipated, but it's not nearly as bad as it was, even with pain medicine on board.

I feel cautiously optimistic.

ETA: On the POTS front, I still wake up every morning tachy, but medication (Florinef and beta blocker) seem to have that under control.

No One Needs EDS Awareness More Than Doctors

2010-05-20T10:43:00.000-07:00

"I don't get it. I mean, I've had less than helpful doctors in my life, but none have denied the existence of my conditions or symptoms or refused to help me feel better. Why do you suppose you and others have been treated this way?"

So asketh Ashley.

Ignorance is the biggest problem.

It's classified as a rare disorder so doctors aren't familiar with it. They haven't heard of it, aren't really sure what it is, don't know how to manage it. What information they do have is often incorrect. The ignorance of Ehlers-Danlos Syndrome is so profound that parents have had their children taken away on suspicion of child abuse.

Why does this happen so much with EDS as opposed to other disorders? EDS is a disorder that is almost as invisible to doctors as it is to the average person walking down the street.

Despite causing intense pain, x-rays, CT scans and even MRIs of the average EDS patient are clean. There are no inflammatory markers in the blood most of the time. The number one sign of EDS, hypermobility, is overlooked by doctors. Dysautonomia, another common complication is also unable to be detected by the average tests.

This means that the only way for doctors to diagnose it is to recognize it. But as I've just mentioned, most of them don't. Even those doctors who have heard of it tend to not realize how serious it can be.

A lot of doctors (dare I say most?) are arrogant creatures. They think their mother was a wood nymph and their father was Zeus, making them demigods. I have never once had a doctor say to me, "Yvette, you know, I really don't know enough about EDS to properly treat you."

Instead of admitting they lacked the experience to care for me, they would act as if there were no such thing as EDS. When I look back at the most heinous doctor's appointments since my diagnosis, all the doctors involved treated me as if EDS didn't exist.

When I told the internal medicine doctor I saw during my last hospitalization that the early satiety and delayed gastric emptying I was experiencing were related to my EDS, she sent me a psychiatrist whom she told I was anorexic.

When I went to a rheumatologist seeking help for my increasing joint laxity and pain, she treated me as if my only problem was a bad attitude and laziness and at one point told to follow my mother's lead and get a job. (I find it ironic that she acknowledged the fact that my mother also has EDS, if only to deride me further.)

Lastly, doctors don't want to treat pain. They really don't. As a young Black woman, I fall squarely into three categories of people who tend to have their pain underestimated and undertreated. When I had to go to the ER with 9/10 pain that wouldn't let up no matter what I tried, the first thing the doctor said to me was, "Ehlers-Danlos doesn't cause pain."

"That's not what my doctor told me," I said through gritted teeth. Chastened, he said, "Well, how is this diagnosed?" In saying so, he indicated that he didn't know much at all about EDS. But he thought he'd try to tell me it doesn't cause pain.

This reluctance to treat pain often has consequences. In my case, my rheumatologist was so focused on not treating my pain that it took me four months (and a different doctor) to find out that the pain in my hips was coming from bursitis. Once I got a steroid shot in either hip, I was able to walk much easier.

This entry has gone on for longer than I expected...but does that kind of give an idea of why doctors might behave the way they do? May is EDS awareness month, but doctors need awareness more so than anyone else, for the reasons I've mentioned here.

I can only speak for myself, but I have heard similar stories from others people with EDS. I feel that many people are similarly baffled as I am.

The Philadelphia Experiment

2010-05-14T10:23:00.000-07:00

The number one aim of moving to Philly with my younger sister was to find a doctor, period. In doing that, I hope to eventually get my pain managed well enough to pick up one of the adjunct positions in the city. Poorly paid, no benefits, but just right for someone who's trying to navigate and with luck, escape the poverty trap of disability.

It's so hard to be optimistic. Since my geneticist diagnosed me I've seen nothing but bad doctors. I was especially saddened that not even a doctor who had experience in treating EDS was willing to treat the pain. I could tell she didn't trust me, but what I couldn't discern was why. Is it even worth it to try to get to the bottom of it?

My instinct tells me that once I see a doctor who's fully familiar with EDS, things will go more smoothly. I hope. Because if I can't find a doctor here, I'll have no choice but to go slinking back to Ohio.

Why I Hate Doctors

2010-04-28T10:00:00.000-07:00

I had an appointment with a new rheumatologist last week which went badly, meaning on my scale that not only did I receive no help, but I also got verbally abused.

In the hour-long initial appointment this woman mocked my degree, insinuated that my problems were primarily mental, insinuated that I wasn't as sick as I claimed, intimated that my diagnosis was wrong and that I just needed to accept this and get a job. I refuted this onslaught as politely as I could, being far more polite than I would have liked to be.

Fear was swirling in my belly during my appointment, but I didn't allow it to show. Fear of incapacity, fear of pain, fear of sickness. As opposed to the fear of two years ago...fear of getting a bad grade. Or maybe fear of Starbucks being out of melon syrup.

Fear is an emotion that I feel but almost never acknowledge, covering it up with anger, sarcasm or put-on self-assuredness. My current ordeal ties into that feeling of being a child all over again, and discovering that you can feel real, pure, unalloyed fear at 29 years old.

I had encountered few challenges in life that didn't yield to a combination of will and intelligence. But I now have to rely on other people to live any sort of life. Not only friends and family, but strangers.

And these strangers, my doctors, will not have me.

I Need Help

2010-04-18T11:49:00.000-07:00

I need help. That's all I can conclude. Taking the maximum dose of tramadol every six hours on the dot gives me just enough pain relief to lie in bed. Once I sit up, stand and start walking around, all bets are off.

Or in the numerical system that doctors are so fond of (fond of ignoring, in my case) it's 5/10 lying down and 7-8/10 once I'm up and about. This makes even venturing out into public almost insurmountable. My face is a mask of strain and I get confused very easily. By the end of the day it is usually a 9/10. This usually ends in vomiting and/or fainting as well as retreating into the basement so my parents can't hear me wailing.

This is unacceptable. And I think I could call it IMMORAL and INHUMANE as well. I wish it were ILLEGAL so that I could expedite the process by pressing charges. I asked for better pain control back in January and it never came. Which means now, in April, I am just a few steps away from being completely unable to get out of bed. Because of untreated pain for a diagnosed disorder known to cause pain.

What should I do? My geneticist said narcotics were a last resort. Well, how much more last resort can one get? Should I wait until I can't get out of bed at all? Even if the answer to that was 'yes' I refuse to. If this new pain management doctor or rheumy turns me down, I'll get another one. And another one.

Why must everything be so damned difficult? How many more hoops do I have to jump through before there's finally some result? Why don't my doctors believe me when I tell them these things? Why don't they trust me?

Why is this my life?

Bright Spots and Rough Patches

2010-04-11T20:58:00.000-07:00

A bright spot in my woeful and worrisome days. The anthology I'm featured in is out and I received my contributors copy a few days ago. It's being sold at our local Borders and when my mother mentioned to a bookseller that I was one of the contributors, they snapped my picture for the bulletin board. I was pretty pleased with that. Seeing my name in print makes me want to continue to see it in print, so I assembled a modest (very modest) sheaf of poems to submit to a small handful (3) of literary magazines. With teaching work on the far horizon, writing and submitting poems (and essays and articles) is the only way that I can feel useful.

I also did an interview on "good patient syndrome" that is, the idea that patients will act against their own best interests in order not to be branded a bad patient. A quote will be in an upcoming issue of Pain Pathways magazine.

I struggled with the decision to fire my rheumatologist; she had experience in treating EDS. But I got tired of trying to pull her ostrich head out of the sand. As I complained of almost weekly escalations in pain she decided that the best course of action would be to get me an emergency appointment...with a pain psychologist. When she told me I was letting the pain control me, I decided it was time to dip. It was clear she wasn't taking me seriously. Now I need to find someone in the area who will. And I need to do it soon.

It's infuriating, because it's standing in the way of my ambition...to teach. Yesterday I spent mostly in bed, only getting up to hobble painfully to the bathroom with the aid of my cane. The cause of this setback? A one hour stroll through the mall with my mother. That was all it took to floor me with pain for the next two days.

The left hip is still not quite right despite being pampered these past couple of days, so tomorrow I'll probably have to walk with my cane most of the day. I'm just guessing. I don't even know if there's something wrong with it (tendonitis?) Ostensibly, this is where a doctor would step in. But I don't have a doctor. I have an ostrich with an MD.

I'm hoping that if I keep writing I will accidentally write something uplifting. Better luck tomorrow. Good night.

A Season Between Winter and Spring

2010-04-09T07:58:00.000-07:00

My notion of myself is changing slowly. It changes in dreams. Last night I dreamed I was in a train station. It was busy, bustling with people. I was trying to catch a train to Chicago, but the trains were ill-labeled. It was very confusing and I would run onto a train only to find it was the wrong one at the last minute and dash off again. The passengers seemed not to notice. Frustrated, I tried again to figure out which train was bound for Chicago. I needed to find the westbound train, but every time I thought I'd found it, it turned out to be headed in another direction. When I woke up I thought even if I get back to Chicago, it may not be the Chicago I remember. And I won't be the person I was before, in any facet.

It's very difficult at almost thirty years old to realize you will have to live your life in a completely different way. Aspire towards different goals. And most challenging of all, try to adapt to a body that doesn't resemble the one I remember.

Really, it's overwhelming.

I fired my rheumatologist today and made an appointment with a new one. No clue if she'll be better than the previous one, but I'm hoping and praying that she is. I'm also off to the hematologist to see about a low iron saturation.

This is going to cost yet more money (that I probably don't have) but it's crucial to have a treating doctor...if I'm ever going to be able to work again. This is the downside of having a rare and incurable disease...actually finding a doctor who wants anything to do with you.

The Song of Crossing Over

2010-03-24T12:03:00.000-07:00

The more I think about it the more I warm to the title of my blog. I think I might keep it.

Spring is coming so resolutely that yesterday I went out into the sunroom to just lie in the warmth; my cats joined me.

My rheumatologist gave me a very hard time about pain management, refusing to prescribe anything but a tidy dose of diclofenac. I ended up crying in the office, which I've never done before, not since this whole saga began more than a year ago. But I was so damned tired. I reached for my resolve and there was just nothing left.

Her dismissal stung me. I'd had to fight so hard for a diagnosis after getting sick. If I hadn't, believe that I would be bedridden right now; that's how ill I was. So this is a rheumatologist who's supposed to be familiar with this rare condition and I'm having to coach her through the appointment. I don't know whether she doesn't believe that I'm in pain or thinks I am and I'm just exaggerating it? She's rapidly becoming useless to me.

I just want to regain as much functionality as possible because my parents are nearing retirement age, and I'm sure taking care of me isn't on their list of things to do. What's more important, I'm not interested in spending two days in a row in bed because my hips won't hold my weight. I didn't get a masters degree to end up like this!

In the soon to be spring

2010-03-17T18:54:00.000-07:00

I feel confident I'll see buds on the trees soon.

Yesterday, I saw crocuses and tulips springing up. It was clear, warm and beautiful...I could see clear out to the lake which spanned the entire north horizon.

Watching the line of water made me feel quiet and a little sad. I'd gone with my apartment back in Chicago in part because of the roof deck which afforded a beautiful view of both Lake Michigan and the skyline of downtown Chicago. At night it was dizzying, a swirl of amber and white lights. It made me feel hopeful and confident.

The water on the other hand, seems to whisper of human limitations. Today, I felt that same feeling watching the distant line of Lake Erie. Poets Matthew Arnold and Lord Tennyson both associate melancholy with the open water. Arnold in Dover Beach and Tennyson in Break, Break, Break.

Before I got diagnosed with Ehlers-Danlos Syndrome, back when I only suspected, I read an excellent blog entry about how the diagnosed patient with EDS wasn't in a terribly different position than the undiagnosed patient. After this latest hospitalization, I can't help but agree. Even with the diagnosis known, they still refused to treat my pain with anything other than over the counter drugs. I was insulted, frustrated and in a lot of pain.

Yesterday I was watching the lake from the top level of the parking garage at my neurologist's appointment. He said, "It seems that they don't understand this disease...I mean, this is what you have."

I said, "They don't understand it. And they don't want to listen to me try to explain it either."

I always thought that if I could figure out the diagnosis, then I wouldn't have to suffer in pain anymore. This was apparently just wishful thinking. Or, I thought it was understood that EDS causes pain, but in the hospital the nurses treated me as if I were faking it.

So watching the impassive blue span of water made me feel more melancholy than usual.

The question is, do I risk offending the one and only rheumatologist who I know is familiar with EDS in pursuit of adequate pain treatment?

I think it's worth it. The entry I read said that patients with EDS who had been diagnosed received better care not because it was offered, but because they now had the confidence to demand it.

Tomorrow, a-demanding I go.

In Search of the New Normal

2010-02-20T21:24:00.000-08:00

The new normal hangs above me like a sky threatening rain. If I accept this I ask, what am I accepting? I learned the extent of the damage done to my autonomic nervous system. I learned that I had Ehlers-Danlos Syndrome. I learned it, I believed it. I accept it in a way and in a way, I don't. With every hospitalization I learn more concretely that there's just nothing anyone can really do.

And I know this. But every time I get out of the hospital, I know it that much more.

"Do you know what Ehlers-Danlos is?" I ask the resident. "Yes," she says, but then wonders aloud why I have three pain medications. Then I hear her explain EDS to my nurse as a "connective tissue disease where they can stretch their joints and their skin..." As if it were some kind of joke or game. Perhaps that's why, after this hospitalization, their brilliant plan to put an end to my stomach problems was for me to stop taking my pain medicine.

I can't do that, so I'm back to square one.

At a fairly young age I'm experiencing the kind of infirmity that is usually reserved for people much older. My parents, nearing retirement age, can walk farther and faster than me. I can't run or climb stairs very well. And these things...probably won't change. Unless it's to get worse.

Let the record show that I suck at "getting over it" and hold grudges indefinitely. Which served me fine when the worst thing in my life was Starbucks being out of melon syrup, but this has served me less well when confronted with incurable (and by-and-large untreatable) illness(es).

Truthfully speaking, I'm living in the 'new normal' right now but just haven't processed it yet. I still haven't grasped that if I jump straight out of bed after waking up in the morning, I will pass out. I haven't grasped that if I decide to relive my glory days and go running, I will be in agony that same night. No wait, I take it back, I have grasped that. I just don't care.

I would love if EDS weren't so rare that there were flesh & blood support groups for it. Not to denigrate online ones, but it's online...medium is the message...not the same *cough* When my nutritionist mentioned that she'd just treated a girl with EDS a few weeks ago, I found myself wanting to know who she was.

Because I look young many of my friends are younger than me. Not by much, but enough that I'm sure they get tired of hearing my tales of woe. And to be honest, I feel sad seeing my friends living the life I used to live.

It's as if I fell off the back of a fast-moving train and am still lying in crumpled heap on the ground wondering what the hell happened.

Real Name, No Gimmick

2010-02-13T20:53:00.000-08:00

Am I really prepared to say on my one and only public blog to which is attached my real name and real picture things like "Walgreens-brand Adult Glycerin Suppositories saved the day?"*

I would have like to come back to this blog under better circumstances. I would have liked to be living the suave, writer-ly life in Chicago. Hitting the open-mic circuit. Drinking good wine, partying with my friends and old school pals.

I never liked change at the best of times, so I'm still lost in the Kubler-Ross matrix of Denial, Depression, Anger etc. I try to remind myself it's only been two months since I was diagnosed and I owe myself some recovery time. I just started physical therapy. I just started seeing a treating rheumatologist. Maybe it's okay if I don't rush back into full-time work, and if society says that someone has to be working full-time to be decent person, maybe that's society's shame and not mine.

One of my sillier doctors thought I might be on the autistic spectrum. This is, of course, patently absurd. But it did get me thinking about the spectrum. I'm trying to find a good book on the subject, one neither geared to parents of affected children nor pathologizing the condition.

I'm starting with Temple Grandin's Thinking in Pictures.... And it's very interesting, because although Grandin isn't typical of every autistic person, the way she describes her thinking process is exactly the opposite of the way I think.

I think entirely in words. I have almost no spacial reasoning. I can't tell you the naked panic I feel when I see bathrooms that aren't marked MEN/WOMEN but instead have pictures. I have to pause... the figure in the skirt...means me...means women. Otherwise I might walk into the mens' bathroom seeing the stylized figure of a man and how my woman's body superficially resembles it. I'm not exaggerating.

On the verbal front, I'm so well-developed that I pick up languages in a heartbeat, even without trying. After living in Chicago for three years and seeing many things written bilingually, I can read simple Spanish.

But I read Thinking in Pictures... and glaze over as Grandin describes the livestock dip vat she designed. The water/pesticide mix is seven feet deep...much deeper than a cow or calf is tall. So the animal walks in. They float? Do they sink to the bottom and then float? I try to impose the rules of buoyancy on my imaginary cows. Where are their centers of gravity anyway? I give up ultimately and turn the page.

Then she mentions that autistic people have trouble learning anything not easily visualized, the way I have trouble with anything not easily rendered into words. As I read on, she talks about discover visual correlates for abstract ideas like 'getting along with people.' What verbal learners pick up through social cues, she had to first translate into her visual system.

It's fascinating stuff.

*they did

iFAQ: What Is this Blog Even About?

2010-02-01T21:21:00.000-08:00

Question I asked myself. I've noted that people usually have purpose to their blogs. On my sidebar are blogs that are definitely about Ehlers-Danlos Syndrome, definitely about poetry, definitely about Japanese fashion. This blog is definitely about only one thing...me. I suppose it will become popular or unpopular based on how interesting 'I' manage to be.

Right now I am engaged in a losing battle with under-medicated pain secondary to Ehlers-Danlos Syndrome. It's like I'm playing tennis and I am my usual terrible self. There doesn't seem to be a ref and I just keep getting hit by balls I'm not strong or fast enough to return. That's a weak sauce analogy, forgive me. I'm counting down until I can take more Tylenol and slap some Lidoderm patches on. I expect if I ever get out of pain, the other facets to my personality will reappear and I'll hit my stride talking about a mix of things with my usual aplomb and wit.

Today while stewing in my usual mix of joint pain, incipient depression, bitterness and apoplectic rage I thought that if I accomplished nothing else in life, I'd try to make so no other human would have to endure what I endured in 2009 while searching for a diagnosis. Far from being a House-type experience where the doctor searches tirelessly for answers, my doctor discharged me after nine days of inpatient with no idea what I had, but in the words of his intern, " [my] feelings [were] causing it."

I was like, 'Oh, hell no.' I didn't say that; I only thought it. But you can be sure it was written all over my face. Then he threatened to commit me.

I'm not exaggerating. That's what happened. But in spite of everything, I feel lucky. I found out what I had, unlike my grandmother who died undiagnosed.

I say this often, but I'm happy this whole mess unfolded in my late 20s, after my sense of self and purpose had fully coalesced. I refuse to cede one inch of territory to anyone or anything, even a disease I was apparently born with.

Which is the source of some stress, since arguably I've been ceding territory steadily. The amount of time I can walk 'normally' without using my cane has shrunk, even with PT. If I do something a lot of people would consider normal: walking through an airport terminal with a backpack and one lightweight suitcase, I'll suffer terribly for it. My shoulders still haven't recovered.

Amid all this, I'm trying to figure out how to recover from medical bankruptcy, secure a paying a job with reasonable accommodations for disability, appease the student loan gods and recover some shred of my former fabulousness. While living in Cleveland.

Jesus take the wheel.

To Do, To Do, Tout Doucement

2010-01-29T20:53:00.000-08:00

Here a review of Kristen Orser's (school pal and superb poet) latest chapbook. I think it's her latest anyhow, she's so prolific I have trouble keeping up. I was in Chicago for a few days recently and besides killing my shoulders hauling luggage through O'Hare terminal I also reconnected with a lot of good poetry-writing friends of mine.

I told them the abbreviated tale of my year as a medical mystery and like the wonderful friends they are, they were sympathetic and helpful. Maureen suggested tutoring as a way to make some money tax-free. I like the idea since it involves less commitment than a full-time or part-time job. It seems like a good way to stick a toe back into the world of 'work.'

And I have new plans to gather up poems for submitting. The anthology comes out in April, and I promised myself to have work out by then.

Half of today though, was spent writhing around in bed in pain. As usual, I could only guess what the cause of the injury might have been. I switched the mattress on my bed with my sister's. My mattress, a little older, has a dip in it, and because of that dip I'd been sleeping with my knees unintentionally hyperextended. So I switched. Then I made up both beds and cleaned the room, collecting my library books, taking out the trash and the laundry. I tried to rest in between. I don't know. In any case, within a couple hours I was crying and writhing around in bed. I dropped bombs of my own: tramadol, meclizine for the inevitable nausea and Lidoderm patches with ace wraps. Even so, I lost most of the day.

It is this problem of pain that prevents me from moving forward. In any direction. Like, as long as I want to do more with my life than lie in bed and cry (most people do) I have to figure something out.

I have ideas; I'll bring them up with my rheumatologist when I see her next month. In the meantime, my new goals include market research for poems, editing poems and applying to see if the hospital will write off my surgery on account of being p-o-o-r.

Lot's Wife

2010-01-17T19:53:00.000-08:00

I'm not trapped; I live here now. That came to my mind as I was driving home on a sloppy day in the middle of January thaw. The sky was perfectly white. I'd forgotten my cane at home and was walking as result "like I had a snowsuit on" according to my friend S. The penguin limp. No swing in the hip and no bend in the knee because it hurt too badly.

But we'd gone to the art museum. I saw the armor room, which I love and many, many paintings, sculptures and trinkets. I look at them and try to discern the artist's point of view.

He must have loved the outdoors, look how he painted the tree canopy-- it looks surreal.

He loved the architecture of Florence. The cathedral is painted with such care I can almost hear the bells.

The museum was bustling because it was the last day for the Gauguin exhibit, but S. and I weren't going to pay $12 to see Gauguin. Maybe for a surrealist I would. Bring me some Dali, some Magritte.

Get to Water Lilies and staaaaaaaaand back. Impressionism. The painting is in three segments as I recall, one segment is here in Cleveland. One of the others, I'm sure, is in France.

In the armor room you see how small the knights are. I'm 5'3...I think the armor would fit me just right! I imagine slipping on the hauberk and the helmet picking up the big two handed sword with the runes on the guard and swinging it hard!

It gave me plenty to think about. I just wanted to have a little fun with my friend and I really, really like museums. I smiled a lot and as a result the people around me smiled or smiled back.

A painting of a youth with a confident look.

No, I'm not going to die. I'm going to live. But as for what I'm going to do with myself, I haven't a clue. I live on a timeline I have deliberately shortened to the space of months rather than years. I further try to organize it into what I'm doing week-to-week, expressly.

For me it'll be spring again soon enough. The snow will melt, crocuses and tulips will spring up, trees will put forth shy green buds. Late spring is my favorite season. Spring was the last time I could remember being something close to okay.

In the Bible, the story of Lot's wife always creeped me out. She turned back to Sodom as it burned and was turned into a pillar of salt. Old Testament God. No mercy.

The painting Lots Frau has hung in the Cleveland Museum of Art for as long as I can remember. As a girl of seven I studied it for a long time with my father. It was huge, desolate and imposing. As desolate and ruined as it appears in this picture it is many times more in person. Clearly, a lot of work went into it. A lot of work went into something that appears so ruined. The deliberate train tracks lead to nowhere. The sky has the ghost of a cityscape, or maybe we only imagine it. It is gone now, a stark white cloud covering most of it. According to the description of the painting, this effect was achieved with salt. Instead of the artist's signature, the title of the painting is scrawled across the bottom right in what looks like chalk. Lots Frau.

Like Lot's wife I look back at my former life in vain. I can't even play at it anymore. Dare to dance and my joints scream later that night. If I go running, my hips and knees try to come apart like a marionette. What's more the idea of living alone, cutting vegetables, carrying armloads of groceries, walking to the post office. It seems obscenely impossible. It is mockingly impossible. You see, my bad collagen caught up with me.

Can't do that, that or that. What do I do? Well, for one, I write. I sing. I listen to a lot of music. If people are having a hard time, I try to encourage them. I try to encourage myself. I fight off depression with a big-ass two handed claymore with runes on the guard. I'm not trapped, this is where I live now. What Lot's wife should have done, ostensibly. All she had to do was keep moving, face forward.

The Lie Is...

2010-01-14T13:10:00.000-08:00

At the moment, my bedroom has no electricity. I open the blinds wide during the day and light six or seven candles every night. It's just enough to read by. I called the new rheumatologist who is managing my Ehlers-Danlos syndrome and told her I was in my second week of physical therapy, but I was still being overwhelmed by pain.

She recommended Icy Hot patches for pain in shoulders and back and said to let her know how they worked, because she was willing to wage war with my insurance company to get me Lidoderm, patches impregnated with lidocaine, a local anesthetic. I've heard good things, so I hope they work out.

In the meantime I've been losing a lot of sleep, taking Tylenol around the clock and even sneaking extra anti-inflammatories when I can. The pain orders me around, determines when and if I do anything, and makes it impossible to plan for the future.

In a week I'll be in Chicago and I worry now about burdening my friends with my pain or possibly getting sick and having to go to the hospital. I HOPE this does not happen.

I cannot convey to anyone how it feels to have this awful disease. Not to my professors, not to my friends, not even to my doctors or my parents. So, I feel as I did as a child, feeling that unique disenchfranchisement all over again, the distance between you and other people.

Going back to Chicago next week, I dimly remember the feeling of listening to my iPod on the L...watching the light cartwheel between the branches, the sound of the rails. I liked to sit backwards. I loved Chicago so much.

I had a grace period, where my body could compensate for my disease and I could live relatively comfortably. But as I aged past my prime, into my mid and late twenties, the system began to fail little by little. I could feel it happening and was terrified. What on earth was happening to me? I got short of breath, my heart would race, my vision would blur...I couldn't concentrate on anything and when people spoke to me, I couldn't understand what they were saying. The words were just sounds, the inflections preserved, but the meanings lost.

My doctors told me I was just having panic attacks, but that didn't seem right, and the medications didn't help. And no one could explain the pain that started as a weak gnawing and at its worst left me writhing and sobbing.

This is such awful, self-fixated stuff. My mind should be a billion other places, but unfortunately it's tethered to my body securely and my body is in crisis. I long to work on poetry, but it's difficult to write in a crisis. Being sick yanks me this way and that, leaving little energy left over for anything else.

I read yesterday, "The lie is that the world is good." It certainly isn't good. Or fair.

Pain and Poetics

2009-12-19T08:09:00.000-08:00

I've been writing. It's weird how it patters out, dries up and then comes bursting out again when you least expect. It's like a peevish roommate in my mind. If I'm bent out of shape about something or feeling very sad, she just closes the door and won't come out for anything. But if I'm on an even keel, or feeling quiet and thoughtful, she's up and dressed and making a huge breakfast with eggs, toast and mimosas.

After I started getting sick, it took a long time for me to be able to write again. My mind was stuck in late spring Chicago, still holding on to my last normal memories. Was I really that girl who took a Cupcake Tour of Chicago?

The present me hobbled about on a cane sometimes, lost count of all the medicines she took and longed pointlessly after her former self. To write, I had to abandon the past and take stock from my present self. It was difficult and many long, disconsolate poems came about.

I Was A Being a Zebra

2009-12-03T17:08:00.000-08:00

I think it's high time I updated. I mean it this time. What was I doing between last August and now?

Having the hardest year of my life. Not the worst and it took me awhile to make the distinction, but definitely the hardest. My thesis and densely packed fall schedule collided with a rare genetic disorder that I'd had my entire life, unknowingly. No doctor could diagnose me, and because they were certain there was something wrong yet unable to pinpoint it, they blamed it on me so they could keep their respective egos intact.

So while my doctors picked on me incessantly, hospitalizing me sure they were going to find it THIS TIME I was always in trouble for missing class.

In the midst of this THESIS-THESIS-THESIS. I didn't know how to tell anyone that I was suffering from an undiagnosed medical problem and my doctors were giving me hell. I'd forgotten to make good enough friends. I tried to act the stoic, but on the inside I was falling to pieces...and getting sicker and sicker.

By April I was desperately ill, running a heart rate of over 200 which made standing and walking near impossible. My doctor hospitalized me, sure they'd get it THIS TIME.

Of course, many genetic diseases aren't going to show up on a blood test. You have to know what you are looking for...what you are looking at.

By July I had to move back in with my parents who took one look at me and shipped me to the Cleveland Clinic where they do medicine right (mostly.) They correctly diagnosed me with POTS.

What this means in short hand is that when I stand (or sit for that matter) the blood that should be circulating up to my brain pools in the lower half of my body instead, primarily in my abdominal cavity and my feet and legs.

My body noticed this happening and made my heart rate higher and higher to pump that blood where it should have been. So in time, my heart rate got ridiculously high and even so it wasn't enough. I had started passing out from lack of oxygen to my brain.

This means I did my last year of grad school with progressively less and less blood in my brain. When I think of it that way, I (almost) don't feel bad about my performance. Almost.

POTS is on a continuum from mild to severe. Mine tends toward the severe end, although not most severe. I am neither bedridden nor housebound but I probably will have to use a wheelchair if I want to work full time. I have to keep my trips alone to two hours including travel time. I need to be able to lie down (not just sit) if I start to get sick.

Since my POTS is secondary to my genetic syndrome I will probably struggle with it for the remainder of my life. Really I struggled with it from the time I was a little girl but like my doctors, I didn't realize what I was looking at.

Currently I am trying to wrangle my way into a part-time job. I managed to stay out of the hospital the whole month of November so I hope it's tenable? I won't know until I try and I do intend to try.

Next entry, I'll be more uplifting, promise. I want to talk about the anthology and fellow Cleveland poets who are included therein. I also want to talk about poetics, I hope in a non-pretentious fashion.

"They mostly come out at night. Mostly."

2008-08-25T01:31:00.000-07:00

Okay, I am seriously going to blog more often. More perils from the apartment. One silverfish and one cockroach. I have sprinkled bay leaf all over the place, in hopes of driving out the cockroach. And I'm sleeping with the lights on! I'm so cowardly, but I can't help it. I've had a lifelong phobia. I feel like Newt in Aliens.

And my cray-cray neighbors bbq every single weekend! Without fail. More than one kind of animal as far as I can tell too. I blame them.

2008-08-03T20:59:00.000-07:00

It has been too long, hasn't it? I've finally moved into my new apartment, which is wonderful and refreshing and I can go to the the Brown Elephant thrift store every single day in search of treasure. The apartment itself is disintegrating. But it has wood floors and so much character, so I'll ignore the fact that I had to split the jamb with a Bruce Lee front kick to get my friend out of the bathroom yesterday.

93 degrees Farenheit

2008-06-06T13:35:00.000-07:00

My father has been uprooting small maples from the yard and planting them in pots in our house. Despite his lack of experience in such things, he's proven successful before: there's now a large-ish maple near the driveway.

And now he wants a bird book, because he grown so fond of feeding the birds. He doesn't know any of their names: called a starling a crow this morning.

As you can see, it's overly hot, and I don't really have anything to say.