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.

A Matter of Life and Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let the Hard Times Roll

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

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

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

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

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

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

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.

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 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....

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.

Wellness or Sepsis?

Over the past two weeks, I'd been getting sudden awful headaches that I described as "the side of my head being torn open." They were impossible to manage. When one struck when I was driving I almost drove off the highway twice, so I had to exit. And then I pulled into a plaza and then I turned off the engine and clambered into the back seat and rolled into the fetal position. And then it lifted some amount of time later and I drove home.

Later, my mother asked, "What'd you do to yourself?" I was getting dressed for bed. Up and down the length of both arms were angry red trails of torn skin and half-moons filled with dried blood. "I scratched myself up...I guess." I said weakly. I didn't mean to, per se. The pain was just that bad. Piggybacking on my usual under-medicated 6/10 these headaches were so bad I just unknowingly scratched the hell out of myself.

I managed to get in to see a dentist, but the pain isn't from a bad tooth or an abscess like I suspected. So what is causing this fever, malaise, splitting headache, loss of appetite....?

I must be sick with something else. For the first time in several years, I'm sick on top of sick. What could it be? A sinus infection? That's the only other thing I can think of that would cause both a fever and such a severe headache. It's not meningitis because...meningitis is not so polite as to give her victims two weeks. That's not how she rolls.

I have to say, I'm not liking it. As to doing something about it, my primary care doctor is a jewel. She is such a jewel that she doesn't have any openings, even for emergencies until March. The secretary recommended I go to one of those drugstore clinics, but you have to pay up front for those, and I'm tapped out from seeing the dentist!

So my choices are to get better or to get so sick I have to go to the emergency room.

Wellness or sepsis. Essentially.

Pray for me, y'all.

If you have a third option, please leave it in the comments, thanks.