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.

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?

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.

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....

No Fake Happys

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?

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

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.

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.

This Damned Republic

"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.

Wherein I (what else?) Complain

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.

Just a short post...

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.

Why I'm NOT writing a medical memoir

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.

One Small Update

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.

No One Needs EDS Awareness More Than Doctors

"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.

I Need Help

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?