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?

Chicago

Several things happened upon my return from Chicago. I was diagnosed with peripheral polyuneuropathy (of the large and small fibers), my mother had a nightmare so distubing she woke me in the middle of the night to see if I was okay, my father asked me what I intended to do when he and my mother passed away.

And, in response, I resolved to shove my health issues to the very, very back of my mind and put something heavy in front of the door.

Chicago was hot. Even the little jet I flew in on seemed to be having trouble staying cool, despite the conditioned air. I had a window seat (always) and I took in the city, staggered on the coast of Lake Michigan.

The lake had a summery color, chambray blue.

J. and I go way back...sorta. We didn't grow up together or anything, we just casually bumped into each other on the Internet, liked each other's writing and when I moved to Chicago, J.'s hometown, for school we met in person for the first time and became fast friends.

In Chicago, I promptly did a bunch of inadvisable things. I ran myself ragged on my very first day, despite having been up since four in the morning. The next day I stripped off all of my compression garments, put on a bikini, went frolicking in the 80 degree heat and lay on the hot, hot sand.

WHO NEEDS OXYGEN TO THE BRAIN?

The next day I couldn't even sit up, so I rested all day (and looted the contents of J.'s fridge) And the next day I was at it again. I ended my trip on a rooftop, with the Sears Tower just visible in the distance.

At home I feel pensive. Surely, I want to move out. Surely I want to live more broadly than I am now. But even these thoughts are at odds with the fact that even five minutes in direct sunlight was enough to sap my energy at an alarming rate.

I tried in vain to convey to J. just how little physical and mental energy I had. It's like puncturing your gas tank in the morning before you drive to work, I said. That's what a hot day does to me. Everything takes my energy. Standing while I'm brushing my teeth, a shower, any meal more complicated than a sandwich or a bowl of cereal....

It takes me an hour to get ready in the morning, then I lie down for an hour before I'm ready to go. When I look at it this way, trying to ignore my health issues in favor of living a little feels irresponsible at best. My doctor said I should only spend 20 minutes a day being upset about my health, which I think is just rich.

Because what am I thinking about while I'm wrapping my abdomen in ace bandanges so tight I can hardly breathe? (That's my version of an abdominal binder, to prevent blood pooling.) Or when I rest my smarting fingers from yanking on my compression tights? Or when I'm trying to schedule my life so carefully so that one event falls on every other day, where an event is an excursion of less than two and a half hours including transportation. Which sounds simple until you find yourself walking away from a poetry reading because if you don't you won't have enough energy to drive yourself home. And it'd be one thing if these things were predictable or stable in any way but no. No one has any explanation.

So how does one live well while losing a tug-of-war for one's quality of life with a disease that isn't even taken seriously by one's physicians?

I suspect that I'm going to be the only one who can answer that question in the in the end.

Oh, Yvette, wah, wah, wah. Have some more pictures. I did go bra shopping with J. and we found out we're the same size! "We're bra buddies!" she said. I said, "I'm gonna steal your shit." But The Little Bra Company did not pan out, sorry to say. Just look at this little slip of fabric! Here, a 28C or some other size I probably was when I was 9.

I might have bought it anyway had not it been for one problem. The band. TLBC claims that their bands run small. They do not. Their bands are the same size as other manufacturers! Thus, a 32C is too large in the band! So the $100 credit I bought is totally wasted (on bras at least) I'd have to gain a lot of weight to be a 32 in the band again, and I'd have to lose a lot more to drop down to the next plausible TLBC size, a 30C, a prospect that should it come to pass, bras would be the least of my worries. So TTYL, TLBC. I suspect I'll be spending my credit on underwear and maybe getting my favorite of the bras I ordered, the Sascha, tailored down to my size by tightening up the band. The cups, for the most part, fit fine. Slightly small.

If I were the TLBC, I would advise that it is the cups, not the band that runs slightly small.

Shit is complicated, isn't it? So in the end, I have one TLBC bra that needs tailoring, the Sascha, one Betsey Johnson bra in a 30D and one ancient French bra I bought from Filene's Basement in a 65DD or some incomprehensible Euro size that I finally fit into.

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.

I Want it to be Autumn

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

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

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

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

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

The Here, The Now

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

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

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

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

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

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

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

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

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

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

House Arrest

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

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

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

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

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

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

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

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

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

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

No Fake Happys

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?

Altered Mental Status

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

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

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

I thought wrong.

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

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

Then I passed out.

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

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

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

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

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

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

I CAN FEEL IT AND IT REALLY HURTS.

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

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

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

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

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

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

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

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

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

I love her though.

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

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

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

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

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

Just a short post...

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

I am a woman....

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

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

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

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

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

Though it clearly will (and has) changed me.

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

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

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

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

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

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

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

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

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

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

But sooner or later....

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

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

What was true right now, Toni asked?

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

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

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

For the moment, nothing else is true.

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

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

"Are You Generally Happy?"

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

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

It worked.

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

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

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

Then I circled 'no.'

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

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

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

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

Because then, what was all my hard work for?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Me, Dreading a Birthday?!

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

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

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

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

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

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

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

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

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

A week goes by.

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

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

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

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

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

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

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

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

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

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

Invisible Illness Week (Sept. 13-18)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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





*'This place' being the world.

Back to Reality

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

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

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

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

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

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

始めまして。私の名前はイベットです。

My name is Yvette, nice to meet you.

卒後した後で日本語を忘れてしまいした。ごめん！

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

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

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

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

大学院の卒後した後で、とても病気になりました。本とに怖いかった。

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

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

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

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

Cleveland

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

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

This in a matter of months.

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

Her sister didn't want to watch it either.

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

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

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

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

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

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

I nodded.

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

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

FUCK. BEARS.

I very nearly wrote that gem on their Facebook page.

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

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

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

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

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

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

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


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

Her face just said, Oh, you poor thing.

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

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

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

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

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

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

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

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


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

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

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

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

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

"Hope makes torture possible."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(Who's running this show?)

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

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

(How do I stop this terrifying slide?)

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

Hating 'myself.'

One Small Update

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.