Ugh. Ugh.

I'm not as good at denial as my parents, although I'm still pretty good. Ignore it, maybe it'll go away... I dragged through the holidays, barely getting out of my pajamas. I slept in the basement so I wouldn't keep my sister up because I'd stopped sleeping though the night long ago.

I literally am uncomfortable in every single position. I can't sit, stand or lie down in any way that will alleviate my pain. That awful ice pick in the nape of my neck.

When my hair started to come out it seemed like a bad joke. Everytime I ran my hands through it, they came away coated in hair. When I washed it hair lined the bathtub and the shower door. There are two frank bald patches above each ear and I cringe everytime my fingers hit my scalp when I touch the back of my head.

It's like, what, the constipation, urinary retention, tachycardia, low blood pressure, nausea, vomiting and months-long headache weren't enough? My fucking hair had to fall out too! My thick, beautiful hair is so thin and brittle now. I didn't realize how much I loved it and took pride in it until I started losing it.

I would like to get some blood work done. For once I actually want to go to the doctor! But my PCP is booked for months and says if I'm really sick, I should go to the ER. My next rheumatologist appointment isn't for months and my GI and neuro terminated our relationship.

I want to use this post for something other than complaining, but when you've spent two weeks straight stuck in your house, your pajamas, your bed, you just want to let it all out.

Especially when your family is in denial. I'm fact, I think they've left Egypt and paddled right on up into Ethiopia in their zeal. I keep trying to get them to read articles but no. They won't drive me to doctors appointments. I'm very angry at them in a way I haven't been since I was banned from the eighth grade farewell dance. Or forced to stay home from a theme park for talking to strangers. I want to laugh, because if only I weren't so sick, I could drive myself wherever I needed to go.

But now I need a lot of help. Their help. And they're just not into it.

This is Why I Hate Doctors

If hope is a thing with feathers, despair is a thing with teeth. I was gazing at the fall finery one afternoon, when despair got a grip on me.

I am never going to get better. I had actually realized this before, though I'm not sure where. It might have been in the ER during the five hour wait to be seen, or in the small, dark hospital room with the neurology resident.

In any case, surely it is true.

My sister is the best gift giver in the family, partly out of excellent instincts and partly out of wealth, working as an investigator for the federal government. Again, she asked me what sort of gifts I would like for Christmas. And again, I ended up with things like duvet covers, a new alarm clock, luxe pajamas. My life has become so narrow, lopped off and cauterized a dozen times till only a stump remains. Somewhere behind me is the bulk of my life.

Now I'm pretty sure my neck has become unstable, as a result of muscle wasting from my untreated GI issues. I've had a headache for three weeks and episodes of leg weakness so profound I can't stand up. I've also had choking spells where it feels like my windpipe is closing.

What frightens me most is that the sicker I get, the more my doctors edge away from me. None of them seem to feel any sort of "commitment." When my legs were so weak I couldn't walk without falling I went to the ER. They didn't want to admit me because the neurology resident said it was "just your joints." My father had to argue with them that he couldn't take care of me.

Once in, the MRI of my head and neck were okay, so they discharged me with a prescription for muscle relaxants without even waiting to see if they would help. It's not legal to discharge someone who can't take care of themselves properly, so first they gave me a walker.

All the while, they kept implying that there was nothing really wrong with me, asking questions like, "Do you have any hobbies?" and "Why aren't you working?" One resident asked me, "Why don't you want to go home? Are you being abused at home?"

"I can't walk!" I exploded. I must have fallen six times in the hospital, because the doctors were never fast enough to catch me when they asked me to walk for them. I still have the bruise on my hip.

It got so tiring having to stand up for myself in the face of such behavior. Everything was getting to me: the lack of pain management (ice packs and tylenol) the ignorance of EDS and the refusal to take instruction, and worst of all, the attitude of crushing indifference.

Rather than a patient, I felt more like a fly that refused to land so it could be swatted.

Jesus Lives

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

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

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

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

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

I'm going to talk about something else next.

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

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

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

May Day

Sometimes I forget that I'm not not stupid. Or worthless. Or bad. It's usually when I'm pretty sick, like now. It is, of course, now Ehlers-Danlos Awareness Month and someone had posted a French doctor's website and I was reading it. I was going through sentence after sentence of French like someone pushing through heavy doors.

And I thought, "You're pretty good at this!" It was a nice moment. It was really like remembering an old self, the ghost of a self who was really quite adept at learning languages.

But how silly, of course I can still read French. I still remember when I decided to take it up, back when I was 12, because my name, Yvette, was French. I like being Yvette. I don't meet a lot of other Yvettes.

So, my rheumatologist and my orthopedic surgeon have stopped returning my phone calls. This action demolishes the wing of my medical team dedicated to joint manifestation of EDS and as such I am in a lot of pain. A lot of pain. I was shocked and dismayed by the fact that no one would call me back, no one wanted to deal with me. It's like I'm some kind of pain leper. The only reason I even know that this represents a termination of our relationship is that my physical therapist past me a message that invited me to avail myself of a chronic pain program.

I was so angry I almost burst into tears on the spot. Really, I felt disrespected, profoundly so. Probably the maximum amount of disrespect one can feel within the context of a professional relationship. And I was furious that my physical therapist would be complicit in such a display and humiliated that it was happening to me.

It's funny, I guess people come to me ready for a fight and then are shocked to see that I have actual emotions. There was someone doing bicep curls in front of me, someone on the exercise bike behind me and I guess my PT had been ready to have a terse argument with me, but when I start to break down instead, he doesn't know what to do.

Also, unless I have cancer, I'm never having surgery again. I'm never falling for the "I will adequately manage your pain for as long as necessary," spiel again.

The really thoroughly screwed up part is that I probably would recommend my surgeon to another patient. Just not a black one. That sounds awful, but since most people badly affected EDS are women and many of them are young women, I had a healthy sample set to demonstrate that I was the only dissatisfied customer. And everyone else was thrilled.

I don't have very bad pain either. I just have very badly managed pain.

To cap this month of unpleasantries, my PCP is on vacation. I'm on the cancellation list with her stand-in, but I'm not hopeful. There's always urgent care, but I'm feeling very shy of doctors right now.

I have to do something, because it's not going away. I have officially reached the ceiling. The best I can at the maximum dose of this drug. And my best is really bad. I've been in my dirty pajamas for days. It's hard to do everything, including get dressed, make the bed, brush my teeth, shower. In fact, I could never do all of that in the same day. Usually I choose to brush my teeth. And I make sure to drink water so I don't get dehydrated. And I comb my hair so it doesn't tangle.

And I try to get though one day to the next.

Current Events

I don't want to post another downer entry, so I'll just leave it as: doing slightly worse, seeing my orthopedic surgeon on Monday and since my rheumatologist is in the same building I hope to handcuff myself to the waiting room furniture or otherwise stage some act of civil disobidience until I'm allowed to see her. I can't carry on like this; I know there's an ER visit in my future and I hate going to the ER for anything, but pain is the worst. I really hope I manage to avoid it. In other news where I don't despair of my life, I bought an iPad since I'm always slumming around and don't always get the luxury of working at my desk. I also got a wireless keyboard, so I could type more easily. Once I found out you can't buy a cheap wireless keyboard (I went with Apple's offical version) things went a lot easier. With the Trayvon Martin case as a spring board, many media sources have tentatively begun discussing rsce. Good. It's about time. It's our responsibiity as citizens to discuss inequalities in our country. And they exist! Between the races, between men and women between rich and poor. And they'll never go while while people continue to hide from the issues saying, "We're all Americans." Well, like I said in my last entry, just because you espouse it doesn't mean you are it. The United States were founded on shaky moral ground. We all know this. and if we all do love our country we should do everything we can to mend it and help it become the things it claims to be. That's clumsily stated, but honest.

Pain

When the inevitable happened, I didn't quite realize right away. I got pissy. I stopped sleeping as well. Then I shrugged heavily. No more pain medicine. It was terrible. It is terrible. I want to frame it in an positive light using some borrowed optimism from before. I want to make this entry about something other than this.

I cooked a meal, black beans and cornbread, something I would have eaten while I was in grad school. Cheap, not too difficult, filling. But I was squirming the whole time. My hips didn't want to weight bear: the left having been recently operated upon and the right with bursitis again. My strange gait upset my left knee which subluxed and then refused to track properly.

It was so exhausting I just went to bed and took a nap. Meanwhile, the 'to do' list my more capable self had compiled stared at me. Unable to get an appointment till May, I cried to my mother, unable to hold it in any longer. I was miserable with pain: old and new.

I didn't know how to salve my discontent, so I read on PubMed how Black people are the minority least likely to receive opiates, whether they are cancer patients, children, post-surgery, or injury victims. The studies went on and on. This I believe. Ever since I had a laparascopy and the surgeon removed a ton of endometriosis from my abdominal cavity, then tossed me some ibuprofen for my post-surgery pain, there's nothing I can't believe.

I thought about writing an editorial to my paper, which is always talking about opiates and pill mills and addiction and loose laws. You'd think they sold OxyContin at WalMart. I'd like to tell them that before they tell everyone to re-elect these guys, that any legislation enacted is going to apply to all people equally. But doctors don't treat all patients equally. They have unconscious racial biases against Black people in pain. A bias that's probably worse because they refuse to believe it could exist.

It's like: you might like science, you might espouse science, but you yourself are not science. You are a person. You have biases. You need to examine them, air them out and evaluate your behavior. Then nobody would be writing pissed off letters: to migraine doctors, to newspaper editors and to you, my poor readers.

Forward we Look & Forward we Go

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

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

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

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

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

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

Hell, they should hire me.

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

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

My thought: We have to have this in Cleveland.

The Rest of My Life

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

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....

October

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.

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.

Spring is Coming

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

"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.'

For I will consider my cat, Lysander.

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....

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.

Metaphor

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.

& some good news too

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

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?!

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.