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?

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.

On Straight

It took me awhile to get the energy to write this entry because my health has not been good. 

In the interim, I've changed neuros to a better one, I think, one who I can engage with better and who makes eye contact with me instead of the office wall.

I still don't know for sure what's causing my peripheral neuropathy. The GI end of things has been especially difficult: I haven't had any solid food in a month and I've lost about ten pounds.

My neuro agreed that my BP was "lowish" and prescribed midodrine to take in combination with my usual dose of fludrocortisone. (Plus the usual salt, fluids, compression hose, etc.) He also told me I should see a motility specialist for my stomach.

There are a couple of them floating around the Cleveland Clinic, but I have such terrible experiences there that I'm reluctant to go. We'll see.

For once though, I've been clear-headed enough to conduct myself as well as I can, despite all these crazy health issues.

My sister flew in from Delaware for Labor Day and we lazed around the whole weekend looking at YouTube videos of makeup, then shopping at Ulta for Revlon Lip Butters and nail polishes and other beauty plunder.

We went to go see The Possession* at the movies and LOVED it with a love that we have for all horror movies since our great-aunt had a huge collection of them and showed them to us one by one whenever we came to her house for the holidays.

I did some writing for the first time in a very long time, both non-fiction and poetry. I want to do send some work in this fall for publication, because I don't think I'm well enough for a residency. 

I hope that in the future (as in next summer) I can write a chapbook and get that published. 

It's amazing what a little bit more energy can do for me. Enough to write this, water my plants, strip and re-make my bed, wash my hair.

The week after next is my birthday and I'm feeling circumspect. My wishlist is all feather beds, pillows, pajamas, things to make me more comfortable! And I thought, "well, what about what you want, what you like?" But it was hard to find things I wanted and liked that didn't intersect with need.

I want frivolity in my life, but it seems there's no room. I need new clothes. I've lost so much weight, even my underwear don't fit me properly.

"Are you a size 0?" my sister asked me accusingly.

"No!" I said quickly. "I don't want to be a size 0," then sulkily, "Only at places like Anthropologie". I feel greatly removed from my own body. I was fussing with my hair in the bathroom and caught a glimpse of my bare torso in the mirror. Every breath I took, my ribcage and every visible rib expanded, then fell, expanded, then fell. I watched myself like I was some alien being.

Do I need to acknowledge this sack of antlers as my body? Or can I just sort of take a breather and wait until all this mess is done and at least 15 pounds have returned? I think the lesson I'm slowly learning is that this mess isn't ending. This mess is my life and I have to live it, good, bad and ugly.

*Based on a true story, y'all!

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.

Let the Hard Times Roll

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

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

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

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

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

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

Jesus Lives

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

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

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

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

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

I'm going to talk about something else next.

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

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

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

May Day

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

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

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

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

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

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

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

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

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

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

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

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

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.

The Museum

I love that the art museum in Cleveland is free, because when you're in a mood (like I am) you can just roll up in. When I was younger, I remember being shocked when I visited other cities that you had to pay to visit their art museums. To me it seemed unthinkable, like charging admission to a library.

This was my favorite piece of art when I was a little girl. I loved this little girl's clear expression and her beautiful gray dress. I told my dad I wanted a dress like that.

Guys take their dates there. Of course everyone's been, but a couple can feel each other out, by listening to what the other thinks of certain pieces. When I go with my friends, I love to tell them what I think of the Egyptian and Etruscan art, and then the Impressionist and Surrealist art.

Some of it is so old and so finely rendered they have to keep it in the basement, far away from the light of the sun.

I wonder what merchant's wife wore the beautifully worked gold necklace saw. Was she older or younger? Was the marriage arranged? Did her husband take joy in her presence?

Did she love her necklace, in other words, because it was gold and precious or because it came from him?

I can't tell you how many Code of Hammurabi-era bodice rippers I've made up in my head from the time I was like seven until now.

Poetry about artwork is called ekphrasis. Look at the sexy, bold Greek-ness of that word! "I'm working on an ekphratic piece." Saying things like that is almost enough to make people forget to make a snide comment about me throwing my money away on a poetry degree. Almost.

I'm writing about The Death of Marat.

I actually read about the death of Marat before I ever saw it. One thing about his death struck me in particular. As he was dying he called, "Aidez-moi, ma chere amie." That is, my dear friend, help me. At first, I thought he was crying out to no one, in desperation. Later I learned he was calling Simone, his paramour, elsewhere in the building. I also learned all about Charlotte Corday, his assassin. It was a fascinating story, though I'm still not sure why I was so compelled by it.

I wrote:

In the Death of Marat, I am Marat, composing, humming
nothing too memorable, nothing complex, for soon I must be killed.

And of course there's much more but I can't put it here if I intend to publish this piece, which I do. Elsewhere in poetry, I'm trying to do a residency, or go into artistic seclusion and work on my manuscript. There's one in the woods of Minnesota I really like where you get your own private room, studio space and free meals.

And in health news I finally found a doctor willing to treat my pain after what, two years? She is very kind. On the day of my appointment my dad was actually late coming back with the car so I walked the office which was 4 miles away and up a large hill. I thought I was going to die. My clothes were stuck to me with sweat, sweat was pouring down my forehead and by the time I got to the building I couldn't quite hold myself up and was clinging to the walls

It's typical of me, to be impulsive and not necessarily exercise good judgment. I just knew I didn't want to wait three more months.

Next up, I think I might talk about my undying affection for fashion and how every doctor gets to see me in mascara, in tights and dresses and hats and oxfords. I miss being in Chicago honestly, because no one in Cleveland seems very interested in how they dress. Ugg boots, jeans, fleeces and puffer vests. I feel like a tourist in my own city sometimes.

2012, EDS awareness, etc.

It's a new year. Resolutions have never been a huge deal to me because of my complete inability to stick with them beyond the three week mark, but this year is going to be different. This year I am resigning myself to being sick for the foreseeable future. On her blog, Michelle has expressed perfectly why this is a good course of action. (Also check out The Dorothy Shoe Project while you're there.) In many ways, that is a great comfort. It actually makes me hopeful, because I can stop aiming for impossibilities and be reasonable for a change.

I can breathe a sigh of relief if I know I don't have to force myself to get a full-time job and move out of the house and be self-sufficient by the end of the year. Ironically, it's that kind of thinking that leads to despair. Accepting this body as it is gives me glimmers of hope for my future. Small ones, and nothing like the way I used to feel about my future when I was in grad school, but that's all right. EDS is in my life now. Well, okay then.

On this blog, I can change the subject I am going to change to subject. Not that I am going to stop blogging about EDS altogether, but other topics will more frequently make their way into conversation.

Before I do change the subject though, I want to talk about awareness.

It puzzles me that people seem to be focused on raising EDS awareness via shows like Dr. Oz or House (before they actually featured it to everyone's general dismay.) This is not how diseases come to be known by the public. Awareness comes from doctors. As more people are diagnosed, they inform their friends and loved ones. When a person of high stature is diagnosed, a news story might come out, which will catch the attention of the general public.

So I think it would be wise for a bunch of people regionally to come together, rent a space makes some sandwiches and cookies and try to get an EDS expert to come and speak to local doctors, nurses, physical therapists, etc. I think this would be very difficult and probably expensive, but Dr. Oz is almost certainly never going to do a show on EDS. And even if he did, I don't think it would be half so effective as going about the problem in the way I mentioned. Doctors will listen to another doctor much more easily than they will to a patient insisting, "But I saw it on Dr. Oz!" The goal of awareness should be to get people diagnosed quickly, accurately and treated effectively. The general public can't do that, I'm sorry. It'd be nice if my friends knew what EDS was, but I'd really prefer if my doctors did.

I am trying really hard to write a chapbook this year. A small book of poems, somewhere around twenty pieces. You wouldn't think it would require such a heroic effort. But of course, EDS is drawing in crayon on all my carefully typed up plans. Editing a poem is really hard work and it requires a lot of concentration. I've been having 3-4 migraines a week, which makes it really difficult to plan anything. I just grab my notebook in one hand and my Imitrex in the other. My stomach is also still in quiet revolt, but I'm better at eating, so I haven't lost anymore weight.

I'm volunteering with a local organization dedicated to getting people paid a living wage and by extension writing to lawmakers and trying to insure that unemployment and health care benefits don't get cut. I'll be doing most of my work via e-mail and phone, editing and writing letters and possibly blog posts, but I really look forward to it.

I also want to talk about a million other things: books I've been reading, autism, interior design, racism and more about the poetry I write. If any of these sound interesting to you, please say so in the comments!

Uncertainties

I did not expect my horrible experiences with doctors to make me leery of people in general, but they did. Even though I long to make friends, I find myself asking new people exclusively about themselves; I realize I don't trust them with much knowledge about myself. Or maybe it's that I don't trust them with medical knowledge about myself? But then again, nowadays how much can I say about myself without alluding to something medical in nature?

"I'm not working, I'm disabled." (Just uttering this phrase is enough to make 80% of people uncomfortable)

"I'm a poet." (When I say this, people look at me like I say I build sand castles for a living.)

"Well, I wanted to be a professor but..." (Mentioning frustrated hopes and dreams to people I just met?.

So I'm stuck between desperately wanting to meet people, and desperately not wanting to talk to them. I feel like there are two of me sometimes: the 27-year-old me who is healthy and hale and can set and accomplish any goal, and the realtime 31-year-old me who sometimes goes up the the stairs on all fours and carries a plastic bag in case she needs to puke while driving. I can't seem to figure out that one of these people no longer exists. The former me is my favorite, so capable, so self-possessed, so ambitious, so bright. She has a masters in poetry and she would like to teach. Younger children, not necessarily college students. Her work is pretty good, you should read it! Very much about womanhood and identity and sense of place....

And then there's...uh...me. Shy of people and looking lost, sick constantly, bouncing from doctor to doctor, trying to find one familiar with her not-so-rare rare disorder. Overwhelmingly most of my energy this past two years has gone towards getting a diagnosis and getting treated. And that's right, that's where it should have gone.

So why am I so sure a new group of people would reject someone like me?

The Rest of My Life

We went fishing on an unseasonably warm day, but dad insisted we wear our long underwear anyway. "Is all this necessary?" I asked as I pulled out my top and bottoms that I hadn't worn since a particularly diabolical Chicago winter.

My sister skipped her ill-fitting bottoms borrowed from dad and asked for a pair of my leggings instead. I wore a short sleeved shirt (mistake #1) under a thin cardigan (mistake #2) and a puffy sleeveless vest that I accurately call "my bullshit puffer vest." I did wear a thick scarf, earmuffs, a hat and my fleece lined wool mittens. I thought I wouldn't need any of it. I was wrong.

Before heading to the lake we stopped at the bait and tackle store which happened to have dozens of taxidermied animals. Bears, ducks, little horned deer, even a polar bear.

My sister said we should pose so we did. Later we froze our asses off at Lake Erie and caught no fish, much to my dad's amusement.

In all this, and especially before this, during Thanksgiving I gave as little thought to my health as possible. I might talk about my health constantly here, but that's so I can live the rest of my life in relative peace.

My stomach has been a known offender since childhood, often dictating when and how much I ate. I've become masterly at adjusting my diet, mealtimes and the size of my meals to avoid its wrath. Until now the amount of food I can eat is too little to sustain my life.

The first doctor admitted I was too complicated for him, so now I have to find someone else. I have to find someone else. I haven't wanted EDS to take a vacation from my life this badly since I was pressed up against the deadline for my masters thesis.

The Dilemma

I spent yesterday morning scrubbing tape residue off my body with rubbing alcohol, being tender around the spots where the tape had ripped my skin when it came off.

The area where the central line went in is itching ferociously which is good; it's healing. This is (was) my central line. Her name is Terri. She needed a name because it was like having an alien in my chest. An alien who made me cough whenever I breathed too deeply and who poked me in the lung on the way in.

My hair has to wait to get washed because my shoulders hurt too badly and I'm just too damn tired to go through the ordeal of wash and condition and de-tangle and deep condition and rinse and de-tangle and leave-in condition then twist and pin.

Everything hurts. I lost much of my muscle with that ten pounds and now my joints are all over the place. I even made an appointment with pain management–reluctantly.The last time I went I got a prescription, but as I turned to leave, my doctor said, "remember you can't smoke any weed with this prescription." It was beyond insulting.

As far as my nausea goes, it's still here and Zofran only takes the edge off. The strange thing is that it goes almost totally away when I'm not physically active, and surges back when I am. The more active I am, the worse it is (has anyone dealt with this before? Does anyone know why this is?) This means that the doctors can't observe it while I am in the hospital, which is really, really frustrating.

It's like a part-time gastroparesis or something. When I went Christmas shopping with my mother in Columbus we walked for hours, and I was popping Zofran all the way, even though I hadn't had anything to drink besides coffee. I couldn't eat at all that day and at one point it got so bad I just went to car and lay down in the back seat. Yet the next day, I was able to eat almost normally.

So I need...what? A neurologist specializing in migraine? Or a GI doctor specializing in motility disorder? And do I go with the hospital system that has the better and more experienced doctors, but only so-so hospital care (where they play keep-away with my pain medication every single time.) Do I go with the system where the doctor aren't experts but the hospital care is great and the doctors and nurses are always willing to listen to my explanation of EDS?

I'm tempted to go with the latter. My horrific experiences in bad hospitals in Chicago and Cleveland left me with PTSD, nightmares and flashbacks brought on by something as innocuous as seeing a medical drama on TV. Just being in a hospital is in itself a highly traumatic experience and I don't want to make it worse by adding doctors and nurses who are being sly by keeping my pain medicine away from me while at the same time acting as if they've done nothing wrong.

This sucks. I haven't been this sick in awhile....

October

I love my new rheumatologist. If it were closer to Valentine's Day, I would give her a valentine. She got an MRI of my hinky hip, whereas my last rheumy would only x-ray it and proclaimed it "fine." Yes, the bones in it were fine, and it was not actively dislocated. What it did have was a case of bursitis and peritendinitis. This is my third recurrence of zombie bursitis, right in time for Halloween. Another steroid injection. My rheumy offered to send me to PT, but I politely declined. Until I find a therapist who is familar with EDS, I'm boycotting PT and maintaining myself on thrice weekly pilates. I asked her to send me to OT instead.

As one of the benefits of being under my mother's new insurance, I can get reimubursed at 80% for silver ring splints.
So I've begun buying those, beginning with the EDS splints for my knuckles which have been in terrible pain, especially when the weather turns cold and rainy. The pointer finger on my right hand has been throbbing so bad, I expect to look down and see that it's three times its normal size. I can't wait to put an EDS splint on that bad boy.

One of the things Dr. Francomano told me to do when I saw her last summer was splint my fingers, but I decided to blow that off. Definitely not a mistake I'll make again. By my calculations, I'll need seven splints. After insurance, I'll end up paying $250 total. Not bad at all.

In general, my autonomic dysfunction has always far exceeded the severity of my joint complications, but my joints are making it clear that they want to join the party.

On the autonomic side, my stomach hasn't been working correctly. Every time I try to eat a whole meal it results in hours of nausea and sometimes vomiting and the rest of the time I have no appetite. I've been getting the bulk of my calories from Starbucks coffee. I've tried every OTC product I can think of. It's definitely not constipation, if only because I know nothing is down there. I can't run on caffeine and desperation forever, so I hope my body will hold out until my next appointment. I don't know if it's gastroparesis, that scourge of many an EDSer, but I certainly hope not.

That's what's on my EDS menu for the month of October, in the middle of my favorite season, fall.

This is the view from my bedroom window. A few scattered autumn leaves under a crisp blue sky. As a girl, fall meant new clothes, new shoes, new school supplies and seeing all my old friends. I could look forward to my birthday and my favorite holiday, Halloween.

Nowadays, I just like the coolness and the smell of the air, the shock of orange and red leaves against the sky, the subtle shift of the constellations edging toward winter. Nothing can ruin October.

I began waving to my neighbors. I've always been a little bit shy, though friendly, but in the time since I'd landed back in the southeastern suburbs of Cleveland, I hadn't spoken or waved to any of my neighbors, most of whom were retirees, older men who had seen me grow up. Leave for college. Return for breaks. Leave again. Work for awhile. Leave for grad school. That was supposed to be the big departure, the one I didn't intend to come home from. But no, here I was. So for a long time I didn't wave.

I had just gotten back from an exhausting pain management appointment, one which I woke up late for, then parked at the wrong building. After running to the right building, the doctor was running an hour behind.

So I wasn't happy. But I got what I needed out of the appointment, which was a rescue medication, something for the worst of the pain. Considering my past experiences with the Cleveland Clinic, this is miracle akin to Jesus feeding the masses with two fishes and five loaves.

(I could (and someday will) write an entire series of entries on the Cleveland Clinic. I have had mostly negative experiences there, including two awful experiences and I still have a picture I drew of a plane dropping H-bombs on their main campus.)

I have been very lonely lately and I think I decided somewhere to start making at least casual friends with everyone I see. A lot of people whose POTS symptoms are severe enough that they are homebound have a lot of online friends, but this isn't my style.

Born on the dividing line between Gen X and the Millennials (Hey, I remember when the Berlin Wall came down!) I've always have a healthy distrust of the Internet and as a college senior, did my senior synthesis paper in part on the works of Sherry Turkle who studies the way people relate to each other online. Her latest book is Alone Together, which I think I'd like to own.

In short, I don't think online friendships are all that ideal. On tests I often score as 100% introvert, meaning that other people sap my energy and I go to be alone to recharge. To be honest, when I was not ill I greatly enjoyed my alone time!

But this is the limit of all that.

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?

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.