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.

Lonely Stories

(1.)

N. and I met on an archetypically beautiful August day. The day was beautiful. I was beautiful. He was beautiful. The confluence of these things drew the attention of people as we walked by. Typically, people ignored me no matter how dressed up I was but when N. and I were together, people seemed to be able to sense my beauty. I don't know how. It did feel nice.

We talked about our writing. He talked about New York, I talked about Chicago. It felt nice to talk to someone again. Finally, feeling confident, I decided to breach another wall of my identity, one I had been pointedly ignoring.I told him why I was wearing thick, black tights despite the heat. It was a pretty cut and dry explanation of orthostatic intolerance. But N. wanted to know more...and more. How did it happen? Was it curable? And I couldn't shut up.

Ten minutes later I had rained all over our date with my mouth with the past five years of my life. I fully expected never to hear from him again. But I did.

We talked more. At his room in a large suburban house. About his kids. We went to the library and took out books and shared passages from them with each other. He told me about his ex. But whenever I tried to tell him about anything related to EDS, he stumbled, seemed unsure.

"Are you sure this isn't mental?" he asked. "Yes, I'm sure." I said flatly, in a tone of voice that settled the conversation.

I showed him my ring splints, my bruise-y skin and funky scars. He would always seem to understand, but then would want to go for walks at one in the afternoon when the sun was out. "Please, let's drive," I'd say. "It'll be fun." he said.

On our last date, I told him all about my grand time at the EDNF conference and how it made me feel so at ease not to have to explain myself to anyone, but also a little sad, because I wanted to go to writing conferences too. I told him I felt that I until my doctors were willing to rally about me as a team, there was no way, I feared, to move forward in my life.

After we had hot chocolate (by now it was fall) at a cafe, we walked back to my car. He picked crabapples from a tree for me and I sorted out the worm-bitten ones and ate them. Delicious.

Then he said, "What if, you're just imagining yourself sick and your really not sick at all." I felt myself made the saddest, barest face. "I'm pretty sure that's what my doctors already think." I said.

(2)

When clinicians found that Black women were dying of breast cancer at a greater rate than White women despite contracting it less often, they initially blamed a more aggressive type of tumor than Black women are prone to getting. However, this did not completely explain the disparity. They went on the control for income, access to insurance, education to try to close to the gap.

"I feel like I'm living these statistics," I thought as I read. Here's a very recent publication from Oncology Nurse Advisor:

According to the report, black and white women reported equal breast cancer screening in 2010: 74% of black women and 73% of white women aged 50 to 74 years said they had undergone mammography screening within the past 2 years. However, when abnormal mammogram results are noted, 20% of black women experience follow-up times of more than 60 days, compared with just 12% of white women. And although treatment should begin as soon as possible after cancer is found, only 69% of black women start treatment within 30 days, compared with 83% of white women.

So, in essence, most of these delays are on the clinical side, rather than the patient side. Reading this I began to wonder why the time to see my neurologist was always the same: seven to eight weeks. The first time I saw him, I waited seven weeks. The second time, eight weeks. For my follow-up after my hospitalization, I was told to follow-up in two weeks, but the soonest they could see me was again, eight weeks. I wonder what would happen if I asked for a nine week follow-up?

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?

Let the Hard Times Roll

I can manage a three hour round-trip outing, and four hours if I strain. Five hours if I'm pushing hard, but six hours is the absolute limit.

Which I found out when I spent my sister's graduation ceremony lying on a hard wooden bench outside the auditorium. It really made me angry and sad and ashamed. My sister was angry. I felt like the (literal?) Grinch who ruined commencement. Worse yet, there was nothing to be done. I was already sitting down. I was already wearing 40-50mmHg compression stockings. I had already drunk the fluids and eaten lightly to build blood volume and avoid pooling, but in the end I still ended up on a bench with my blood pressure so low that when my father came to collect me, I didn't realize where I was at first.

I always make the mistake of planning too far ahead, or not planning far enough ahead. If I can twice a year, do something related to my work (writing) it's impressive. I wrote to a close friend. Oddly enough, oftentimes I see my true feelings for the first time when I reveal them to someone I truly love and trust.

I wrote: "Live and see as much as possible is what I want to do." That has probably been my goal since childhood. I've always nurtured an endless burning curiosity for everything. I want to read everything, know everything, experience everything. But I feel limited and small and insignificant. The people I go to for help make me feel like I don't exist. I keep trying to get my life out of the "get sick, go to the doctor, get rebuffed, get sicker" track, but it's damn near impossible.

I keep looking for that space where my passion and my fate come together. I'm sure I could be a useful human machine somewhere.

This past Mother's Day I thanked my mother for never having called me "pretty." She only ever called me things like "smart" or "clever" or "kind." She taught me which attributes were to be valued and which were not. I didn't learn to do my makeup until I was 21 and my hair was hopeless until grad school, but I have a terminal degree in my field and in the end I think I'm beautiful anyway.

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.

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.