A Matter of Life and Life

I was not raised to show emotional vulnerability, so I don't have many friends. As my symptoms have worsened, my reluctance to tell someone, anyone about how I feel about them has increased.

Not what is happening to me, you understand, but how I feel about it. And I'm scared out of my wits. I have nightmares where I'm screaming for my parents because I can't walk, but I wake up and I feel like I can't tell anyone.

I can't really feel my legs from my knees down, because a lot of the proprioception is gone in them. This is a sensory neuropathy, I think. So unless I can see where I'm going, I don't know where I am in space. The consequence of this is that my legs feel "invisible" when they are covered up, like when I'm in bed at night. It's an intolerable sensation. I have to wiggle my toes constantly to reassure myself that yes, my feet and legs are there. A lot of sensation, such as to pinprick and temperature change is also gone. This is small fiber neuropathy.

It took a long time, I feel like to finally get a full battery of autonomic tests redone, but when I did I saw a familiar expression flicker across my doctor's face. Uncertainty.

That, ah, what is this shit? look. So he tells me that in the beginning, my tests showed that only my feet had stopped sweating. But now only my forearm was sweating. And it was only sweating a little. And if he did the test next year, I probably wouldn't be sweating at all.

I felt my mind began to race furiously, because the appointment seemed to be happening way too quickly. He was already shuffling papers, he was already preparing to leave! "Wait!!" I said. "What's causing this?"
"Probably since you had a virus first, it's an autoimmune mediated reaction."
"So, can't we do anything about it?"
"Well, you're not immune deficient...you don't have any antibodies."
"But people take medicine for autoimmune problems all the time!"
"You don't have an autoimmune problem. You have an autoimmune response."
He turns to leave again. "Wait!" my voice is on the edge of hysteria, but if he notices, he shows no sign. "What about my EMG."
"Your EMG was perfectly normal."
"No it wasn't. I had no reflexes in my ankles."
"Some people with small fiber neuropathy have diminished reflexes."
"But reflexes are large fibers!"
After giving me a I wish these bitches would stay off the Internet sigh, he leaves. And he doesn't come back.

I spend the weekend with my new friend seronegative autoimmune-mediated small fiber autonomic predominated neuropathy.

I told my friend J. at one point that sense I was little I had been able to tell when people were being deceptive but it only made me sad, because I couldn't actually make them be forward with me. I knew that my neuro thought that my insurance wouldn't pay for IVIG because I wasn't immune deficient and lacked ganglionic aChr antibodies. But that didn't mean he couldn't try. And that didn't mean he couldn't trial me on something like prednisone.

I was certain of one thing, that my neuro had a paucity of either ideas or motivation, and that I should seek a second opinion. In the meantime, my invisible lower legs and progressively worsening balance are scaring me. What other nerves will my immune system attack (excuse me, respond to.)

Why am I always made to feel like I'm overreacting, when I'm pretty sure I'm not overreacting? The heat wave that has blanketed the middle of the country means that I have to be in an air conditioned environment. Only the upper 30% of my body is still sweating properly.

For a long time I felt I was getting worse, but was told I wasn't active enough, or that POTS didn't get worse. So when I finally do find out I've gotten worse and will get worse, I get this total non-response. It feels like the first time I got sick all over again, where I had to get totally bedridden and non-functional from POTS before someone finally diagnosed me and even then, only by accident.

Since my feet started getting numb in February, things have been getting worse quickly and granted, I'm just a bitch who likes the Internet, but I think there's an opportunity to actually do something about this.

I want to not care about my health. Because I don't want to just survive, I want to live. I want to go on dates and go out to eat and volunteer. When I had to struggle just to get my doctor to answer my basic questions, I felt like he didn't care about my life at all. Only my survival. He didn't even ask me what symptoms I'd been having. In fact, he never asks me. He's just a wretched doctor. When I told him my blood pressure was too low for me to get a record of my standing blood pressures, he told me to buy a more expensive cuff. Oh, okay.

Wretched doctors makes it hard for me to enjoy my wretched life. I just want to kick back, knowing that these jokers have my back for once, so I can just feel at ease as I get displaced in my body by advancing illness. Is that too much to ask?

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.

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.

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.