State of the Union

My brother is in the army and will shortly deploy for S. Korea. I will miss him so much, but I'm very proud of him. I'm proud of my little sister too. My sibs are so talented.

I wish I knew what vitamin or mineral I wasn't getting enough of so I could try to eat more of it! I think I'm getting malnourished because other bizarre things have been happening as well: my fingers are separating from my fingernails, my skin is always dry and flaky. And it's been much more fragile than usual. Anywhere that something rubs against my skin I find cuts and scabs. It's been happening with my ring splints, my braces and even my bra! There are long cuts where my bra bands sits on my skin. But if I wear a looser bra then the weight of my chest makes my back hurt really badly.

I guess I should find a new GI doctor and gets some tests or who knows what else will happen. I'm at my limit.

There was a roboticist who said, "It takes a human body to think human thoughts." Is my body "human?" I think that that the decline in my health has really changed the way I think. So much of my energy, most of my energy just goes into trying to hold on one day at a time. There's so much pain...that there's hardly any room for other thoughts, let alone looking into the future and making future plans. Even though there's so much I need to do and more everyday.

Got into a modest argument with my dad when I asked him to come with me to my doctors appointment next week. I told him doctors were less likely to insult me when I had someone with me. Then he said, "why do you let them insult you? I'm not trying to "let" them do anything. I just need their help. It is hard to stand up for yourself when you need help so badly. Also, my parents are not interested in advocating for me or learning anything else about neck instability, tethered cord or EDS in general. If I were to get very ill right now and have to go into the hospital, I don't think that my parents could advise my doctors in any capacity regarding my health.

Therefore, it's up to me. Therefore, I have to try harder.

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.

Sandy, Sandy Hook, and everything after

I'm feeling much better. I gained about six or seven pounds and they gave me life. It's funny, such a seemingly simple thing: my hips plumped up, I got the smallest of pudges on my belly, my ribs disappeared under a layer of fleshiness...I gained a dress size, a cup size.... And all my endurance came back and no small measure of well being. People with EDS are always warned against being too heavy, but in my experience it is far more damaging to be too light. Muscle is everything too us. It holds us together. From my lowest point, which was during Superstorm Sandy which knocked out our electricity for a week and left our house at 50 degrees till now, I feel so much better.

About the shooting in Newton, CT, I just have this to say. Events like this take place in a soup of favorable conditions, so its never just as simple as "gun control" or "mental health." Would that it was. Criminality of this kind arises from profound suffering.

It's true that assualt rifles should not be available to the general public and mental health services need to be expanded, but more importantly, why are some people (men) burning with a silent, dangerous rage? Why are they so discontent that they must vent their anger not only on themselves but on others in the most violent, unimaginable way? What message is in the anger? There is one there.

On a lighter note, as part of my New Year's resolutions I've decided to start a lingerie blog. I've been addicted to bras and lingerie blogs lately for several reasons: my frequent shifts in size, the fact that local stores never carry my size no matter what size I am and most of all, the strange fact that I always need to wear a bra due a muscle imbalance in my back. Due to my neck instability, my back can't seem to support the weight of my chest, even though my chest is pretty small. For that reason I'm constantly in search of better fitting, more supportive bras. Bras have become, in effect, an assistive device for me. And blogs are a great way to audition new styles before I spend my money. I especially like Undiegamer, Venusian Glow, Braless in Brazil and Invest in your Chest.

My sister who is forever frank said, "Don't do it. Creepos are gonna masturbate to you." I assured her I wouldn't be showing my face, but she said that my websit would end up on some perp's computer when the authorites dumped it, along with the kiddie porn. I started to argue, but what do you say to that?

In any case, once it's underway I'll find someway to let everyone here know and still maintain some degree of anonymity.

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?

My first video blog!

Excuse my...everything.

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.

I had a disastrous few days in the hospital. So disastrous, I don't even want to talk about it right now. I will say that I'm getting sicker with whatever it is. I have a really bad headache in the back of my head and my legs are very weak. It's getting really hard to get around my own house which is full of stairs. All this on top of the GI and autonomic symptoms I was already having. So I'm not very happy about it.